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Full text of "Communual grief in relationship to HIV/AIDS"

Re 

.f\1L 

6*03, 



EPISCOPAL DIVINITY SCHOOL 



Thesis/Project 



COMMUNUAL GRIEF IN RELATIONSHIP TO HIV/AIDS 



BY 



AXEL SCHWAIGERT 



Diplom in Evangelischer Theologie, Eberhard Karls Universitat Tubingen, 1998 



Submitted in partial fulfillment of the 

Requirements for the degree of 

DOCTOR OF MINISTRY 

2010-04-18 



© Copyright by 

AXEL SCHWAIGERT 

2010 



Approved By 



Supervisor: The Rev. Dr. William M. Kondrath 

William Lawrence Professor of Pastoral Theology and 

Director of Theological Field Education 




Reader: The Rev. Canon Edward W. Rodman 
John Seely Stone Professor of Pastoral Theology and Urban Ministry 



In memory of my mother, 

Rosel Schwaigert 
who is very much missed. 



IV 



Table of Content 

A: Introduction 2 

5 

B: Grief Theories 5 

B.2: Grief and mourning in theory 6 

B.2. 1 : Grief as Phases 6 

B.2.2: Grief as tasks 10 

B.2. 3: The dual process model/oscillating model 1 1 

B.2.4 "Living in the Village of Grief ' model 14 

C: The role of community in communal grief 18 

C.l: Introduction 18 

C.2.: What is "community"? 1 9 

C.2.1: Community as a relational experience between the individual 

and a group 19 

C.2.2: Conclusion 20 

C.2.3: Community as the function for the individual and for the 

larger community 21 

C.2.4: In the village of grief 22 

C.2.5: Conclusion 23 

C.3: The HIV/AIDS-affected community as a community of individuals 23 

C.3. 1 : A determined/concentric model 25 

C.3. 2: A mobile/relational model 29 

C.3. 3: In the village of grief 31 

C.3.4: Conclusion 32 

C.4: The HIV/AIDS-affected community and its functions for the 

individual and the wider population 34 

C.4.1 : The community as space for the individual and communal 

experiences and expressions 34 

C.4.2 In the Village of Grief 35 

C.5: Community as Scriptural Community. 35 

C.5. 1 : The HIV/AIDS-affected community as the place of memory 36 

C.5.2: In the village of grief 38 

C.5. 3: The HIV/AIDS-affected community as a community with 

a ritual life that keeps the memory fresh 39 

C.5. 4: The HIV/AIDS-affected community as a community with 

a passion for j ustice 40 

C.5. 5: The HIV/AIDS-affected community as a community with 

a commitment to love 41 



C.5.6: The HIV/AIDS -affected community as a community with 

a mission 42 

C.5.7: Conclusion 

43 

D: Different expressions of grief as reaction to different types of loss 45 

D.l: Multiple ongoing loss 46 

D.2 Stigmatized and unacknowledged loss 47 

D.3: Unclear loss (without the direct individual experience of loss.) 49 

D.3 . 1 : Loss of history and future 50 

D.3. 2: Loss of potential 50 

D.3. 3: Loss of sexual freedom 52 

D.3.4: Loss of fear free intimacy 53 

D.3. 5: Conclusion 56 

E: Places and times for memory 57 

E.l: The AIDS Quilt 58 

E. 1 . 1 : In the village of grief 5 8 

E.l .2: The history and structure of the AIDS Quilt 59 

E. 1 .3 : The AIDS Quilt as a communal experience 62 

E. 1 .4: Critique of the Quilt 65 

E. 1 .5: The Quilt as an expression of anger and conflict 66 

E.2: ACT UP! The Political Funerals in the US 66 

E.2. 1 : In the village of grief 66 

E.2.2: The history and structure of the political funerals 67 

E.2. 3: The political funerals as a communal experience 69 

E.2.4: Critique of the political funerals 72 

E.3: The AIDS Ribbon 73 

E.3 . 1 : In the village of grief 73 

E.3. 2: The history and structure of the Red Ribbon 73 

E.3. 3: The Red Ribbon as a communal experience 74 

E.4: Conclusion 74 

F: The situation in the 21st century 77 

F.l: The change of my basic assumption 77 

F.2: A hypothesis of how the situation is today 81 

F.2.1 Individualization 81 

F.2.2: Avoidance 83 



VI 



F.3: Conclusion 89 

G: Ecclesiological consequences, the understanding of the nature 

of the church and the reactions of the church. 91 

G.l: The church and grief 91 

G. 1 . 1 : Biblical traditions around grief 92 

G.l. 2: Church-historical traditions around grief 96 

G.2: The church and crisis 98 

G.3: The ecclesia as both ecclesia luctans and ecclesia servitance. 102 

G.4: Consequences for the church as the grieving one in the 

Village of Grief 105 

G.5: The Church as scriptural community in HIV/AIDS-related grief 108 

G.5 . 1 : The church as a community with a memory 1 08 
G.5. 2: The church as a community with a ritual life that keeps 

the memory fresh 1 1 1 

G.5. 3: The church as a community with a passion for justice 1 12 

G.5. 4: The church as a community with a commitment to lov 113 

G.5. 5.: The church as a community with a mission 1 14 

H: Conclusion 116 

Appendix: Living in the Village of Grief 1 8 1 

Introduction 181 

The theory 181 

The Narrative: Living in the Village of Grief 121 

The Dream 121 

The Central Square 123 

The Town Hall 124 

The Pub 125 

The Smith-Shop 126 

The Church 127 

The hospital 128 

The Shop 129 

The Cemetery 130 

People walking around blindfolded or with their hands in front of their eyes 1 3 1 

Ways leading out of the village 1 32 

Bibliography 134 



vn 



List of Illustrations 

Illustration 1 : The oscillating or dual process model 13 

Illustration 2: A determined/concentric model 26 

Figure 3: A mobile/relational model 30 

Illustration 4. a: The church opposite to the crisis/problem 99 

Figure 4.b.The church as part of the crisis/problem 99 

Figure 4.c: The crisis as part of the church 100 

Figure 4.d: The church and the crisis are ontological combined and 101 
inseparable 



vin 



A: Introduction 

The initial subject of this thesis developed in a conversation during the preparations for a church 
service for the Gay Pride celebrations in Stuttgart/Germany. I had commented to a friend that I 
struggled to find an adequate expression of grief for the losses due to HIV/ AIDS. Just lighting 
candles again seemed to be a ritual rather void of meaning. I commented that I was tired of going 
through what I experienced as meaningless moves of grief. The response of that friend was that 
"as a community we have not adequately grieved yet." 1 I realised that this response summarised 
much of my own experience and my own struggle around HIV/AIDS-related grief. 

Over the past years in my ministry as a pastor in a German congregation of Metropolitan 
Community Church in Stuttgart/Germany, I had realized a growing problem around the grieving 
for those "we have lost to HIV/AIDS." This problem became evident in both counselling LGBT 
people as well as writing and conducting liturgies of grieving for the annual World AIDS Day or 
Gay Pride celebrations for many years. Although HIV/ AIDS and the loss of people to HIV/AIDS 
is still very much part of the LGBT community, it seems to become more and more difficult to 
find ways to express the grief for this loss. Many younger gay men in particular (at least in 
German culture) have not knowingly lost someone to HIV/AIDS. They might be aware that a lot 
of people have previously passed away, but they themselves have no direct personal experience 
of that loss. They do not personally know somebody who has died. Sometimes they even think 
they do not know someone living with HIV/AIDS. Very often I have to tell people, that they do 



1 I thank Joshua 1. Love, Director of Metropolitan Community Churches Global HI V7 AIDS Ministry for this 
conversation and for being a critical and supportive friend during the development of this thesis. 



know people living with HIV/AIDS, but they just do not know that these people are HIV 
positive. In addition, a whole generation of gay men who could have served as role models for 
the younger generation is missing. The older generation who have that personal sense of loss 
seems to have become tired of the repetitive rituals of grieving. Many do not want "to light a 
candle in memory of a loved one" any more. But still, there seems to be the longing for a 
communal dealing with and expressing of grief. 

From my professional life as a full time funeral director I know that there are numerous 
approaches to understand individual grief and the development of grief within couples. The grief 
in a family system is more difficult to understand. With communal grief it becomes much more 
complex. 

In this thesis I therefore will develop a way to understand and communicate communal 
grief as a process the HI V/AIDS-affected community has to go through. I will offer this as a 
development of grief theory in a narrative form as a "Village of Grief. I then will apply this 
grief theory to the situation of HIV/AIDS. In order to do so I will offer a theoretical definition of 
the HIV/AID S-affected community. In a next step I will describe several exemplary expressions 
of communal HIV/AIDS-related grief in the past and come to an understanding of the situation 
in the first decade of the 21 st century. In a final step I will describe the ecclesiological 
consequences of these findings for the church. 

I approach the question of communal grief in relationship to HIV/ AIDS from a very 
specific point of view. This personal viewpoint will necessarily limit and narrow the dimensions 
of this thesis. I write from the viewpoint of a white, European man, who self identifies as 



sexually moderately-active gay man. I am trained in a traditional German protestant theological 
system at the University of Tubingen and serve an international denomination with a focus in the 
GLBTQ community as a pastor in Germany. I have also studied and lived in the USA, where I 
have experienced both the gay and the HIV/AlDS-affected community. Currently, I personally 
am HIV-negative but am very conscious that I am affected by HIV/ AIDS. I experience myself as 
financially rather independent and stable, and live in a health system that provides excellent care 
for those living with HIV/AIDS. I am very aware that all that puts me in a privileged situation. 

This privileged viewpoint constitutes the limitations of this thesis: I will discuss a 
general, theoretical HIVAIDS-affected community without going into the special experiences of 
possible sub-groups. My thesis will also be based on the HIV/AIDS experience of the rich, 
western, mainly white, male society, particularly based in Germany and parts of the USA. This 
thesis has also a clear temporal dimension. It is written in the 10 th year of the 21 st century and 
reflects clearly from this point in time. 

I cannot discuss the experiences in the so-called developing world, where the majority of 
the HIV/AIDS epidemic happens nowadays. I will discuss the specific limitations in regard to 
the theoretical and historical aspects of this thesis in the relevant chapters. I will also offer only a 
Christian theological, especially ecclesiological, consequence of my findings. It is my hope, 
though, that this general ecclesiological consequence can be applied to other dimensions of the 
global HIV/AIDS experience. 



B: Grief Theories 

B.l: Introduction 

To be able to communicate and reflect about grief we need a common language: vocabulary and 
syntax. We need to agree on the terms we use, and how we use them (vocabulary) and one the 
structural principles that connect those terms (syntax). The various theoretical and practical 
approaches to grief in both, bereavement theory and spiritual and self help guides, offer a wide 
range of words, images and structures. Some of them differ profoundly, some seem to be very 
similar but use related terms in different ways. This leads to confusion and misunderstandings. 
This is especially difficult in relation to grief and HIV/AIDS. Here we do not deal with one 
single loss that can be dealt with and be grieved, but with a very complex system of multiple 
AIDS related losses. These losses not only include numerous cases of people who passed away, 
but different kinds of losses, such as loss of future, family, sexual freedom and many more. The 
grief related to HIV/AIDS also contains elements of fear and other emotions, as well as 
stigmatization. 2 

In the following I want to present the language I will use in this thesis to talk about grief 
and the communal aspects of grief. It is a combination of several traditional bereavement 



1 1-v 

David Nord, Multiple AIDS-Related Loss : A Handbook for Understanding and Surviving a 
Perpetual Fall. Series in Death, Dying and Bereavement. Washington, D.C.: Taylor & Francis, 
1997. 



theories and will be presented in the form of a creative narrative which leaves room for 
communication. 3 



B.2: Grief and mourning in theory. 

B.2.1: Grief as Phases 

The most influential model of coping with grief is widely attributed to Elisabeth Kiibler-Ross. In 
her groundbreaking book "On Death and Dying" 4 she describes several stages people experience 
when confronted with the diagnosis of a terminal illness and approaching death. And although 
she did not per se write about post-death experiences 5 her "Five stages of grief' 6 are still widely 



3 With this I do not offer a comprehensive overview of bereavement theory. Such an overview 
might be found in: Rodney J. Hunter, Francine Cardman, Peter E. Fink, Sharon Parks, and 
Edward Collins Vacek. Dictionary of Pastoral Care and Counseling. Nashville: Abingdon Press, 
1990, 472 - 475 and in: Margaret S. Stroebe, Handbook of Bereavement Research : 
Consequences, Coping, and Care. 1st ed. Washington, DC: American Psychological 
Association, 2001. 

I also do not offer a complete bereavement theory but merely a practical framework to 
communicate about bereavement theory and grief and categorize the different communal 
expressions of grief, strategies of dealing with grief to compare and relate them. 

4 Elisabeth Kiibler-Ross, On Death and Dying. New York: Macmillan, 1969. 

"In the highly selective review which follows, it will be noted, that there is no reference to the 
popular work by Elisabeth Kiibler-Ross (1969). Some writers have referred to the stages of dying 
she describes as stages of grief. While there are some similarities in behaviors, there are some 
very significant differences as processes. To attempt to force her stages of dying in post-loss 
grieving is distorting and misleading." D.K. Switzer "Grief and Loss" in Hunter, Dictionary of 
Pastoral Care and Counseling. 
6 Elisabeth Kiibler-Ross, On Death and Dying 51 - 146 



used to describe the experience of grief. 7 She offered a way of understanding the experience of 

grief and loss in more detail than just an overwhelming monolithic emotional and psychological 

occurrence on one's life. The five stages are: denial, anger; bargaining, depression and 

acceptance. 

In denial the person does not want to accept the fact that loss and grief is happening to them. 

This applies especially in experiences of terminal illness. 

Elisabeth Kubler-Ross acknowledged that those stages do not necessarily occur in that 
order and that not everybody will experience all those stages, although there will be at least two. 
Her theoretical approach nevertheless works under the assumption that there is a more or less 
linear development from one stage to the other. In order to reach acceptance one has to go 
through the other phases. This is a development the person often experiences passively as 
something that happens to them. 

The classic stage model of bereavement was presented by Parkes (1972). Parkes 
describes four phases: numbness; yearning; disorganization/despair and reorganization. With the 
stage model Parkes and others describe different successive stages of grief, which a person has 
to go through. Those stages in themselves are different attempts to describe the emotional and 
psychological reality of a grieving person. That person might be identified by others, or identify 



n 

Elisabeth Kiibler Ross applied those stages to different kinds of loss experiences: loss of job, 
income, freedom, loss of a loved one, loss of live. 

The scope of this paper does not allow to adequately discuss and present other major 
contributors to the development of the stage model, such as Yorick Spiegel and John Bowlby. 



himself/herself in one of those stages at a given moment in their grief. The successive order is 
often not experienced, though. 

Another more recent adaptation of these stages can be found in the work of Verena Kast, 
which is especially influential in the German context. She distinguishes four stages: denial, 
emotional outbreak, search/separation and new organization. 

A further influential model in the German context, especially for pastoral care and counseling 
is offered by Ruthmarijke Smeding. In her model Gezeiten der Trauer 10 (tides of grief) 11 she 
describes 3 phases of grief 12 

1. Januszeit (Time of Janus): The grieving person is split: looking into the past and into the 
future like the double faced Roman god Janus. It is a time of confusion of the mind. 
This time always starts with the Schleufienzeit (time in a lock). This is the important time 
between death and funeral, in which the grieving person, like a ship on a river in a lock, 
does not move forward but merely changes a level. The funeral is understood as the rite 
of passage that then opens the way for future grief. 

2. Labyrinthzeit (time in the labyrinth) where the grieving person walks through a time of 
emotional confusion towards the center of self and comes out again transformed. This 



See: Verena Kast, Zeit Der Trauer: Phasen Und Chancen Des Psychischen Prozesses. Stuttgart 
Kreuz: 2006. 

10 Ruthmarijke E. W. Smeding, Trauer erschliefien - Eine Tafel Der Gezeiten. Erstaufl. ed. 
Wuppertal: der hospiz verl., 2005. 

For Smedings work, the translations are mine for the purpose of this paper and are not 
authorized by the author. 

I offer a short description of these tides because there is no English translation of Smedings 
book available. 



time includes (not exclusively): to bear the pressures and grief; to learn to carry the grief; 

and to let go of the lost person. 
3. Regenbogenzeit (Rainbow time) where the grieving person re-enters his or her personal 

path of life, without giving up the lost person and integrating the grief in his/her personal 

life. 

These phases or tides do not appear linear but in a spiral and are unpredictable. Smeding 
points out the important insight that grief for a close relative never totally stops. Instead the 
grieving person learns to live with his/her grief without giving up or letting go of the person lost. 

This very important insight and development is also articulated by Roland Kachler, a 
German physiotherapist, who after the loss of his 16 year old son in a car accident formulated a 
model of integrating the love for his son in his daily life and his remaining family instead of 
"letting him go" as the goal of a successful grieving. 

All the above models understand grief as a process in which the grieving person has to 
go, more or less passively, through different stages to finally reach a similar quality of life as 
before the loss and complete his/her grief successfully. 14 The experiences in this process are 



1 ^ 

See Roland Kachler, Meine Trauer Wird Dich Finden! Ein Neuer Ansatz in Der Trauerarbeit. 
Stuttgart Kreuz: 2005. 

"Since grief is a process with stages, it is essential for a person to go through each one of the 
stages completely in order to reach a positive resolution of the whole grief reaction. This 
reorganization is accomplished when the person is capable of living approximately as 
meaningfully, happily, and effectively as prior to the loss." D.K. Switzer "Grief and Loss" in 
Hunter, Dictionary of Pastoral Care and Counseling. 473 



relevant, necessary, and normal individual developments on this way. 15 In regard to the 
communal experience of grief here is a difficulty in these approaches: Different people need 
different timeframes and they remain in different stages for different amounts of time and 
experience the stages in different orders. The above models are clearly intrapersonal models. The 
stage model does not allow the development of a communal strategy of dealing with grief. It 
does make a communal way through grief extremely difficult. For this a interpersonal model is 
necessary. 



B.2.2: Grief as tasks 

A slight but important change from this paradigm is presented by J. William Worden. He 
understands grief and mourning as a series of tasks the grieving person has to complete. With 
this he moves away from a linear of spiral view. He understands grief as work the grieving 
person has to do. Although he still argues that ultimately all the tasks have to be completed, he 
sees that there is not necessarily a set order. Worden offers four tasks of mourning: To accept the 
reality of the loss; To experience the pain of grief; To adjust to an environment in which the 
deceased is missing; and to withdraw emotional energy and reinvest in another relationship. 



"Grief understood as a process also communicates to it us that it is usually a transient, 
although not smoothly and rapidly moving, period of time. This means that the feelings and 
thoughts and most of the behaviors of grief as they appear during the process are normal. Many 
powerful ones may be experienced at the same time, some may be in conflict with each other, 
and together they may be absolutely overwhelming to the individual." Ibid. 473 



10 



In his understanding of grief and mourning the grieving person is no longer the passive 
victim of an internal process that occurs over time but can learn and understand that grieving is 
something that has to be done actively, can be learned, and can be furthered through help from 
the outside. This model also allows more freedom to the grieving person to engage in the task 
they need in any given moment. 

The problem I see with this approach is that it sees grief as something one has to work 
through. It focuses on grief as something a grieving person actually can do. For many grieving 
persons this is not the experience, though. Although they might experience themselves as active 
in their grief, it is still not something they want to work through, but rather an experience that 
happens to them. Another problem is that this model expects that a grieving person works on all 
tasks at one point or the other and then finally completes the work of grief. And although this 
might be true for the initial period of grief, grief itself is something one never totally works 
through. The tasks above also can apply to different types of loss, not only for the loss of a close 
individual. 



B.2.3: The dual process model/oscillating model 

This model allows a lot of freedom of individual expressions and experiences of grief and 
mourning. Stroebe 16 describes two main areas that a grieving persons experiences: The "loss 
orientated" area and the "restoration oriented" area. The loss orientated area is characterized by: 



Margaret S. Stroebe, Handbook of Bereavement Research : Consequences, Coping, and Care. 
1st ed. Washington, DC: American Psychological Association, 2001. 



11 



fears, regret, sadness, fear, hopelessness isolation, feelings of guilt, preference to dwell in 
memories, acknowledgement of grief, mourning. Restoration orientated characteristics include: 
are feelings like hopefulness, gratefulness, the desire to move on, the making of plans, looking 
into the future, hunger for normality and the desire to taking time off from grief or taking a pause 
from grief. The fact that the grieving person is able to function even in deep grief is restoration 
orientated. 

According to this model the grieving person moves freely between those two main areas and 
within those areas. Sometimes this movement can be very rapid and oscillating, sometimes the 
grieving person remains over a long period of time in one area or sub area. There is no set order 
or timeframe for this. One can also experience extreme changes from one to the other within 
very short periods of time. 

Therefore this model is extremely helpful in looking at groups of grieving people. It 
allows the different individuals to position themselves in any given time at a specific place in this 
model, without needing to expect the others within the grieving group to be at the same 
emotional, intellectual, or spiritual level. This model explains therefore very clearly why and 
how different individuals can experience grief very differently and live out there mourning in 
very different ways. They are just in a different space within this model. 



12 



Illustration 1 : The oscillating or dual process model 




(The Illustration comes form: Grief groups for children and youth, Khululeka, South Africa.) 



17 



(The Illustration is taken form: Grief groups for children and youth) 
http://www.khululeka.org/understanding%20grief.pdf (accessed Feb. 2009) 



13 



B.2.4 "Living in the Village of Grief model 

Based on the above information I want to develop and use a model that incorporates the different 
strengths of the classic models. I understand grief mainly as the confluence of different needs 
arising out of the experience of loss or other challenging experiences such as profound change or 
uncertainty. 

I propose the following model for this thesis in order to talk about and understand the 
different communal needs of grief and morning. It is not a full theoretical development of a grief 
theory, but rather a narrative model that offers a platform or place for grief, rather than an 
understanding of grief as a process or a number of tasks. 

I also propose to use "Living in the Village of Grief 18 as a communicative tool to be able to 
formulate the different aspects of communal grief in relationship to HIV/AIDS. 

"Living in the Village of Grief ' is the attempt to bring this model in the form of a 
narrative, finding different imaginary spaces for the needs a grieving person might have. Those 
different imaginative spaces describe one need, but also offer the freedom to express this need in 
many different individual ways. That means that if two persons find themselves in the same 
village of grief, they still can have different experiences of their exact location. The village of 
grief is also not necessarily a completed summary of all possible needs but allows individuals or 
communities to include their own places. 



1 8 

For the full narrative with explanations see Appendix A 



14 



Not all grieving people will feel the need to visit all the different places, but all will find 
themselves in at least a few of them over time. 

Contrary to the classic models I do not propose that the experience of grief is ever 
finished or completed or even needs to be. It just changes over time, might become less 
important for the individual at a certain moment. But there is always the possibility for the 
grieving person to return to a certain aspect of the grief. Perhaps to work through a single 
experience they just have remembered years after the loss occurred, or to reconnect to the 
original feeling of love even within a new loving relationship. 

"Living in the Village of Grief presents a narrative that gives a visual and imaginative 
background to different experiences of grief and mourning. The reader should be able to identify 
himself/herself and his/her experience in this narrative. This should help to identify one's own 
place in the larger experience of loss, grief, and mourning. And the reader should be able to 
identify where others are in their experience of grief and mourning. Very often people grieve 
together for the same loss, but they do it at a different pace or with different intensity. 

Although to grieve is a highly individual experience, it is nevertheless an experience that 
happens with others. Especially in families, this duality of the individual and the communal often 
leads to conflict. Different people deal with their grief differently, they grieve differently. What 
is appropriate and helpful for one, might look highly inappropriate and even irreverent to others. 
One might need a lot of quiet time to learn to understand the loss, or need a lot of time where 
nothing changes. Another might feel the need to be hyperactive, to change a lot in one's the own 
life. Some people want to keep as many of the possessions of the deceased around for as long as 



15 



possible; others might want to clean out everything as soon as possible, for everything is loaded 
with painful memories. There is no right or wrong in this, just difference. The story might serve 
as an explanation for this experience and hopefully as a way to communicate one's own 
experience. 

Grief is not single experience one has to go through, but it is a highly complex 
conglomerate of very different, often contradictory experiences. There is also no real end to it. 
The acute phase of grief and mourning will finish at one time, but the experience of grief will 
remain, as the loss will remain. The experience of grief changes over time. 
The different places to deal with different needs are as follows. This order follows the structural 
needs of the narrative and does not present an order in time or importance. 

1 . The forest: the place of shock, helplessness, disorientation. 

2. The central place: with a statue symbolizing our loss. This is the place for remembering 

3. The Town hall: the place to deal with the legal and organizational aspects of grief. 

4. The pub: the place to meet with other people outside of grief, to take a break from grief. 

5. The smith shop: the place of anger, violent feelings, for expressing the need to "beat it 
out". 

6. The church: the place for quietness and solitude, but also the place to connect to one's 
faith and higher being, the place for meditation and spirituality. 

7. The hospital: the place where one goes to in order to have somebody take care of 
wounds, the place for therapy of spirit, soul, and body. 



16 



8. The shop: the place for re-organization of life, to acquire new things or skills to deal with 
the new situation. 

9. The cemetery: The very concrete place of the grave, but also the place of horror and 
nightmares, the place where one has to face one's fears. 

10. People walking in the village blindfolded or with their hands in front of their eyes: They 
cannot or do not want to see the grief they are in. They either are in denial or in 
avoidance. Both of them might not agree that they are actually in the village of grief at 
all. I still understand both denial and avoidance as possible and under certain 
circumstances adequate and natural reactions to grief that needs to be reflected in this 
model. Strategies of avoidance and denial therefore need to be addressed and be 
recognized. I included those people to be able to talk about them if not with them. 

11. Ways leading out of the village: The possibility of going on with life without active or 
conscious grief. Although the village will always be there, one does not have to stay 
there, as long as there is the possibility to come back. 

For the purpose of this paper I will apply the village of grief model to the different particular 
issues of HIV/AIDS-related communal grief. With this the village of grief will serve as a 
theoretical and narrative background for this thesis. 



17 



C: The role of community in communal grief 

C.l: Introduction 

In the following I want to formulate a general description of community and the possible 
relations of the individual towards that community. In a second step, I want to describe a 
"HIV/AIDS-affected community" which will serve as the framework of community for this 
thesis. 

The different models of thinking about and understanding of community affect directly 
how we then understand what happens within or outside of a community. To talk about a certain 
expression of that particular community or a certain experience within this community requires 
first a definition of the community itself. 

To think about a special emotional expression or a special behavior in a community, we 
first have to understand what community means. Some communities are well defined. They have 
a clear membership, duration of that membership and conditions of that membership. Other 
communities are less well defined. One can even think about virtual communities that have no 
actual existence outside the artificial room of the internet. 



18 



C.2.: What is "community"? 

The Compact English Oxford Dictionary defines community as 

noun (pi. communities) 1 a group of people living together in one place. 2 (the 
community) the people of an area or country considered collectively; society. 3 a group 
of people with a common religion, race, or profession: the scientific community. 4 the 
holding of certain attitudes and interests in common. 5 a group of interdependent plants 
or animals growing or living together or occupying a specified habitat. 



C.2.1: Community as a relational experience between the individual and a group. 

In a first step I want to approach the concept of community from a relational understanding of 
the connection between the individual and a certain group of individuals. I understand 
community as the place, where an individual expression of life is possible, accepted, and 
congruent with the expression of life of the other members of that community. The community is 
the place, where the individual language, both the lingual and cultural code, is understood. It also 
is the place, where either the whole of the individual expression of self, or that part of a 
individual self which is relevant for that particular community is understood. That includes the 
way others relate to the individual experiences and expressions of life and self. This relating to 
an individual "I" then creates an understanding of "us" in contrast to "them," meaning those who 
do not relate positively to the individual expression of life and self. 

To enter into a particular community is therefore a process of learning the appropriate 
language and behavior. It is also a process of negotiating one's individual position in this 
community. When this process is successful, one experiences a belonging to a certain 



19 



community. All this is very multidimensional, and can range from very clearly defined groups 
with very clear rules, code, and boundaries to very amorphous and loosely coded communities; 
from communities that require an authoritative acceptance of membership to very loose and 
perhaps temporary communities where the members of the community do not even know each 
other; from communities where only oneself and/or the community itself can declare 
membership to communities in which outside forces place the individual with or without the 
consent of the community or the individual. This process of becoming a member of a community 
can be a clearly defined experience, where the individual undergoes a rite of passage of moving 
from outside to the inside, from them to us. Or this process can be a slow change of position in a 
learning process, without a clear moment of crossing over a boundary, but instead is a constant 
negotiating of the individual position. 



C.2.2: Conclusion: 

This shows that a community is not a fixed assembly of individuals but a process of constant 
negotiating and redefining of one's own membership and the membership of others. In 
communities with clear code or boundaries this negotiating can be fairy simple or even 
ritualized. In more complex communities this negotiating can be a highly complex, difficult, and 
disputed interaction that is constantly ongoing. This makes the definition of a certain community 
very difficult and requires a clear explanation of what one understands as the community in 
question. The definition of a certain community can therefore not only differ regarding a 



20 



definition from the inside (self-definition) to an imposed definition from the, but also can differ 
from individual to individual. 



C.2.3: Community as the function for the individual and for the larger community 

In a second step I want to approach the understanding of the community under the aspects of the 
function of that community. In this understanding the focus is not on the relational network of 
the individuals forming the specific community but on the function the community itself fulfils 
for the individual and in the surrounding society. 

For the individual the function of a community is aimed towards the positive effects of being part 
of a larger number of individuals that share some common interest. Such a community functions 
as places where the individual is not alone, but can encounter other individuals with shared 
interests, and can experience strength, support, and security. The community therefore offers the 
place where the individual expression is understood by a larger group, not necessarily including 
the direct need to engage with other individuals. The community allows for communal 
experiences that might be different from individual experiences, or only possible as communal 
experiences. It also offers an experience of combined strength that cannot be experienced alone. 
With this combined strength the community also offers support and protection against the 
individuals outside of the community or against other communities. 

Possible conflicts can develop, when there are conflicting understandings about the 
shared interest or the importance of different functions in the community. These conflicts can 



21 



both develop inside the community and be placed onto the community from the outside. 
Different members of the community can have different understandings of the shared interest or 
focus on different aspects of it and therefore come to different understandings of the function of 
the community. This can lead to the development of sub-communities with their own culture and 
language who focus on a special sub-group of individuals or a special sub-interest. 

For the larger society the experience is similar. The individual can be identified and 
classified as a part of a larger community. This can lead to an easier understanding and easier 
communication. The actual spoken language and the cultural language of the individual can be 
understood more easily when it is related to the spoken and cultural language of a community, 
which another community can learn as a foreign language. Therefore communities can serve as a 
way for better understanding. 

This also can unfortunately lead to prejudgments and a long list of -isms, such as racism 
or sexism and to xenophobia in its different expressions such as homophobia, when the 
individual is only understood as a part of a community and there is no willingness to positively 
engage in this community. 



C.2.4: In the village of grief 

The model the village of grief can serve as a tool to illustrate and understand different aspects of 
grief. On an individual level it can serve as a way for the individual to identify and name 
individual needs. Those needs can change over any given period of time. This is illustrated by 



22 



the walk through the village. Depending on the need, the grieving individual goes to different 
places that serve that particular need. On a communal level it emphasizes the fact that the 
grieving person is not alone in the village of grief, but part of a larger community. This 
community might have the same cause of grief as the figure on the central square. But the 
individuals that form that community are not necessarily all in the same building. It shows 
therefore the importance to identify one's own location and the location of the others very clearly 
in order to be able to communicate adequately about one's own needs. 



C.2.5: Conclusion 

The discussion of community in its different aspects has shown that communities serve many 
different and often conflicting purposes and functions, depending on the community itself, the 
position of the individual in or towards the community. To discuss communal experiences or 
expressions such as grief, requires therefore first a discussion of the understanding of community 
itself. 



C.3: The HIV/AIDS-affected community as a community of individuals. 

For the purpose of this thesis I want to concentrate on a particular community and a particular 
experience of this community: The community of those who are, in one way or the other, 
affected by HIV/AIDS and its experience of loss and the resulting grief. This implies that there 
actually is a community or a communal experience, where this grieving can take place, where 



23 



this grief exists. Although HIV/AIDS is not only an experience of single individuals but has 
many aspects relevant to "the community," there is no clear understanding or common 
agreement about who or what this community actually might be. There are different ways of 
defining this community, depending of the purpose of this definition. A community in which a 
specific approach of prevention might work will look different than the community of all those 
who have lost loved ones to AIDS. 

To discuss the grief in relationship to HIV/AIDS requires a much broader approach to the 
question of community. For the purpose of my paper I there want to discuss and use a "HIV 
affected community." This community includes a lot of different individuals who become 
members of this community in very different ways. Some of those memberships and ways of 
gaining this membership are easily defined, some come with more difficulties. Not all 
individuals in this community even have a sense of belonging to this community. Some will even 
clearly state that they do not belong to this community at all. They are identified by others as 
members of this community. 

For the purpose of this paper I understand grief according to the dual process 
model/oscillating model according to Stroebe, 19 which I have discussed earlier. 20 We can 
understand community as a network of individuals that are placed by themselves or by others in 
a certain relationship to other individuals. This network of relations then forms the actual 
community. If we describe community as a relational experience between the individual and a 



Margaret S. Stroebe, Handbook of Bereavement Research : Consequences, Coping, and Care. 
(1st ed. Washington, DC: American Psychological Association, 2001) 
20 see B. 2.3. 



24 



group we can use several ways in which we can describe the HIV/AIDS-affected community. In 
the following I want to describe two different models, a concentric model and a mobile-relational 
model. 



C.3.1: A determined/concentric model 

One possible way of describing the HIV/AIDS-affected community is a concentric model. In this 
we have several concentric rings of diminishing proximity to the reality of HIV and AIDS. 
Individuals can place themselves in one of those rings or be placed on one of those rings by 
others. In this model the focus lies on the proximity of the individual to HIV/AIDS. 



25 



Illustration 2: A determined/concentric model 



Sexual active but in 
committed relationship 



Sexually 
not active 




This system of rings is often used in a conscious or unconscious self-placement of people in 
relationship to HIV and AIDS. For some it is a tool of risk management in which one can assess 
how close to the risk factor of an HIV infection oneself or others are. The descriptions in the 
rings are only some few examples for an infinite number of different categories. These categories 
are often a product of misunderstandings, myths, wishful thinking, denial or other reasons, and 
often do not reflect a scientific reality. A possible category is "gay man," which is often labeled 



26 



as high risk group and therefore perceived as at more risk than a category "non-gay persons." 
This is an example for one of these misleading categories. Being gay by itself does not constitute 
a higher risk than being not gay. Only certain behaviors constitute a risk. A sexually non-active 
"gay man" lives under less risk, or in the concentric system is in less close proximity to the 
center, than a sexually very active non-gay person that engages in high risk behavior. Yet still 
there are many of those rather simple labels and categories that are used to place people within 
those systems. 

The closer one is placed toward the center, the greater is the risk. The center of this 
system is formed by those persons living with AIDS. Persons living with the HIV infection form 
the next circle. The following larger circles are formed by a declining factor of perceived risk. 
The membership to the two inner circles of AIDS and HIV are fairly clearly defined by medical 
evidence. They have a clear rite of passage and a defined sign of membership that in the case of 
the HIV infection is not reversible at this moment. 

The other circles are less defined. The status of being HIV negative is only temporary and 
can change with every sexual encounter. It is therefore possible that an individual develops a 
clear identity as being HIV or AIDS positive. It is much more difficult to develop such an 
identity for the status of HIV negative. 21 That means that the outer circles are much less defined 
and the sense of belonging to the HIV/AIDS community becomes less and less clear the further 
away one places oneself in this concentric system. 



21 

See: Steven Ball. The HIV -Negative Gay Man: Developing Strategies for Survival and 
Emotional Well-being. (New York: Harrington Park Press 1998), 5-7. 



27 



This can be described as a movement in only two directions: closer to or less close to the center. 
A HIV-infected person might at one time develop AIDS. A promiscuous person might be 
infected with HIV. A person living in a committed relationship might be seen as at a lesser risk 
of receiving the virus. The risk gets larger again, though, if this person slips and behaves 
promiscuously. The sexually non-active person is seen as not belonging in those circles at all, 
because he/she is in no risk. In this understanding one moves from a clearly identified 
membership towards a constant negotiating of the individual position. 

This simple way of identifying one's own position in the HIV-affected community or 
placing somebody else in a certain position might serve its purpose in times. I believe it is a 
natural desire for human beings to identify his/her position in a group or in a situation. It can be a 
tool of heightened awareness, of risk management, as well as of denial. This system though has a 
number of problems. First, it sees the issue itself, namely HIV/AIDS, as a clearly defined, round, 
point of reverence. The reality of AIDS though is that it has a set of different angles and realities: 
medical, social, psychological, racial, economical, ethical, to just name a few. The concentric 
model is also a rather determined system. It only allows for a movement towards or away from 
the center. It serves well to categorize different degrees of proximity, but does not adequately 
show the dynamic developments of the people involved. 



28 



C.3.2: A mobile/relational model 

To think about the HIV-affected community I therefore suggest a different approach. HIV/AIDS 
is not a one-dimensional central point, but a multidimensional issue, which has different angles 
and facets. Depending from what direction one approaches HIV/AIDS, it offers a different view 
and different problems and challenges. Looking at the economic aspects of the disease is 
different from issues of sexuality although it might be related. Also, the starting point of people 
approaching the issue of HIV/AIDS is different, as well as the path they are taking. An HIV- 
negative male theologian reflecting on ethical issues of equal access to medical treatment will 
see a different problem, will come from a different starting point, and will take a different path 
than an HIV-positive woman in Africa struggling with daily survival. Yet both belong to the 
HIV-affected community. 



29 



Figure 3: A mobile/relational model 




To think about the HIV affected community in this way allows a much broader and more 
inclusive view onto this community. It allows both a self placement as well as a placement 
through others. One is not placed in a certain ring, which itself forms a certain generalized sub- 
community ("the promiscuous" for example) but needs to place every individual in her/his 
individual place. It also allows an individual to identify him/herself in several different places. It 
also allows a description of a movement towards, away from, or around the center. 

In addition one's place is not determined over time: sexual behaviors, the interest in the 
topic, or the sero-status might change. Even in the same moment one can inhabit multiple places: 
At the moment I am writing this sentence I am: HIV negative, a scholar and activist very 



30 



involved with certain aspects of HIV/ AIDS, a gay man not very sexually-active, but very 
conscious about safer sex practice. All this places me in different, flexible places within the 
wholeness of the HIV/AIDS-affected community. Even individuals who perhaps would not place 
themselves in this community have, by denying that belonging, a place in this community. I am 
aware that this assumes an inclusion into a community against the will of the person. But those 
voices of denial also have to be heard within the community. 

For the following I therefore will understand the HIV/AIDS-affected community as the 
community of all those who place themselves or are placed by others in some relationship to an 
HIV/AIDS-related reality. 

One could now argue that according to this model basically everybody belongs to this 
community. This is true. Through the continuous existence of HIV everybody is in some 
relationship to this reality. The challenge for the individual as well as the community is, to define 
this place carefully and with respect for oneself and for others. 



C.3.3: In the village of grief 

The village of grief is based on this mobile/relational model. In grief, which is only one possible 
reaction to the over all experience of HIV/AIDS, every individual needs to find his or her own 
way through the village of grief. This reflects the highly-mobile aspect. Individuals have 
different speeds, directions, turning points. But they are in relationship to each other and so 
forming a community. They are united by their common cause of grief, which in itself is 



31 



multidimensional. This is symbolized by the statue on the central square. I will discuss in a later 
chapter how this statue could look like in the real world. But the individuals are also united 
through their respective relations toward each other. Only when people see and experience others 
in the same village can they come to an understanding of community. The community is both 
necessary for an experience of communal grief and is build by this experience. 
It is also important to include those into our understanding of the village of grief who would 
deny or avoid being part of the village of grief. We can perceive them as wandering through the 
surrounding landscape or the village itself. This inclusion will be important for the individual's 
own placement in the village of grief and especially for the ecclesiological implications of this 
model. If the church 22 comes to the decision that her role could be that of a guide in the village, 
she needs to know who is in the vicinity and what might be the right guidance the church could 
offer to the HIV/AIDS-affected community. 



C.3.4: Conclusion 

In the determined/concentric model we think in terms of an "us vs. them." This thinking might 
be unavoidable for some people and perhaps even necessary in certain circumstances. Self-help 
groups are based on the very clearly defined purpose or guiding principle of membership. This 
model is a reflection on the human need to categorize and organize our surroundings and to 



My understanding of church will be discussed in the ecclesiological section of this thesis. 



32 



determine our position in the model. 23 Yet it invites an exclusive thinking that easily allows one 
to place oneself or others outside of the community. It invites the denial of belonging and of 
responsibility. 

The mobile/relational model allows, or even forces, a much more inclusive approach. Its 
mode of thinking is "many, just different." Its basic assumption is that everybody belongs to the 
HIV/AIDS-affected community. It allows each individual to place themselves and others in a 
system of relationship towards HIV/AIDS. It invites the acceptance of belonging and therefore of 
responsibility for the individual and the community. In the following I will work in a 
relational/mobile model of community and of thinking about community. 

This shift of thinking itself about the HIV/AIDS-affected community in itself already 
changes the basic approach to many issues regarding HIV/AIDS including prevention, 
communication, and all issues of grief. The first step of approaching these issues in the 
HIV/AIDS-affected community therefore needs to shift toward and agree to use a 
relational/mobile system of thinking. Following that decision the community needs to learn and 
operate within this model. 



See: Steven Schwartzberg. A Crisis of Meaning : How Gay Men are Making Sense of AIDS. 
(New York: Oxford University Press, 1996) 220. 



33 



C.4: The HIV/AIDS-affected community and its functions for the individual and the wider 
population. 

C.4.1: The community as space for the individual and communal experiences and 
expressions. 

Grief is not a single emotion, but a conglomerate of very different and often conflicting 
emotional experiences and expressions in response to the experience of loss. These emotions can 
be expressed outwardly but can also be an internal experience. 

If grief is expressed, it always has a community as audience. This community can be the 
family or the direct support group for the individual, but can also be a larger community gathered 
to witness the expression of grief. Here the community serves as audience of grief. This audience 
is not necessarily expected to join into the experience of grief, but to accompany, witness, and 
accompany it emphatically. An example for that function would be a public funeral service for 
an individual. It is clear that not everybody in the audience shares the same experience of grief, 
but by attending the audience demonstrates a certain degree of involvement. The audience gives 
witness to the grief of individuals and it shows that it accepts the expressions of grief. 

Grief can also be an experience that surpasses the individual experience. A community 
can experience and express grief that is no longer, or never was, individual. This grief is 
experienced by the individual as a member and part of the community. Here the community itself 
is the performer of grief. An example for that function would be communal services of 
remembrance and mourning for the victims of war. The individual might not have a direct 



34 



emotional involvement, or a direct experience of loss. But as a member of the affected 
community the individual can join into a communal expression and experience of grief. 



C.4.2 In the Village of Grief 

In the village of grief this is expressed through the fact that the grieving one is not alone in the 
Village. The grieving the individual is always part of a community and needs to relate to the 
other parts of this grieving community. This is both opportunity and challenge for the individual. 
In the Village of Grief it becomes clear that one does not need to grieve alone and can join others 
in the different places of grief. But it also becomes evident that the individual needs to be aware 
of other grieving individuals in addition to the own grieving. With this awareness the grief- 
process changes and becomes more holistic. 



C.5: Community as Scriptural Community. 

In Confronted by God, Verna Dozier discusses the function of a community for the individual, 
the community itself, and also the wider population. Based on the functions of community in 
Scripture, she describes a scriptural community: 24 "As I reflected on the images of community in 
scripture, it seemed to me that there are five characteristics that marked them: a scripture 



See: Cynthia L Shattuck and Fredrica Harris Thompsett. Confronted by God: The Essential 
Verna Dozier. (New York: Seabury Books, 2006), 93. 



35 



community is a community with a memory, with a ritual life that keeps the memory fresh, with a 
passion for justice, with a commitment to love, and with a mission." 

In Dozier's understanding, a scriptural community does not necessarily need to be a faith- 
based community. The characteristics she derives from her reading of the scripture can also be 
applied to a secular community. In the following I want to apply this concept to the HIV/AIDS- 
affected community. In a second step I want to apply the same concept of scriptural community 
to the ecclesiological understanding of church. 



C.5.1: The HIV/AIDS-affected community as the place of memory. 

To have a memory means to continuously and repeatedly think about a certain experience. To be 
able to do this, one first needs to experience consciously and gain an understanding of this 
experience. 

Before the memory can be kept fresh by rituals, it needs to be build. Here the community 
needs to serve as the place where this memory-building exercise can take place. The communal 
experience of HIV/ AIDS therefore needs to be discussed and described, needs to be shared and 
build in the HIV/AIDS-affected community. Different from an individual memory that is clear 
for the individual that shares this memory, a communal memory needs to be created. This 
communal memory is the summation of all individual memories within the community but is 
also more than that. The individual memories need to be shared in order to build a communal 
memory. In this process of building a communal memory the individuals listen to each other and 



36 



then carry the memory of the other as part of the developing communal memory. In this process 
of cumulating memory the communal memory then grows beyond the summary of many 
individual memories and gains a meaning of its own and an understanding of that meaning. The 
individual then is brought into this memory by its sharing even without having experienced the 
original, actual memory 25 . 

This creation of a communal memory can happen through the repeated telling and 
hearing of the individual experiences but also through the expressions of art in many forms. For 
the HIV/AIDS-affected community those expressions can be literature and poetry, paintings and 

97 

sculptures, music and dance, and many more. A genuine HIV/AIDS experience of building a 
communal HIV/AIDS memory was done in the creation and exhibition of the NAMES Project 28 . 
This building of a communal memory is a continuous effort and is never finished. It is constantly 
changing and developing. New individual memories are added to it, old individual memories 
change over time, and the meaning of those memories shift. This is especially important for the 
HIV/AIDS-affected community, who is still in the middle of the actual experience. HIV/AIDS is 
not over yet and therefore new individual memories are constantly added to the communal 
experience. Those new memories are for many individuals more the experiences of their daily 



Shattuck and Thompsett, "The community has a cultic memory. Deep in that memory is some 
event in which they all shared, either by actual participation in it or by being brought into it." 95. 

See: Leslea Newman. A Loving Testimony: Remembering Loved Ones Lost to AIDS : An 
Anthology. (Freedom, CA: Crossing Press. 1995) and Joe Brown. A Promise to Remember : The 
NAMES Project Book of Letters. (New York: Avon Books, 1992) for examples. 

27 See: Rob Baker. The Art of AIDS. (New York: Continuum, 1994) 

28 The NAMES Project will be discussed in detail later. 



37 



attempt to cope with the situation rather than memories of loss. In the crisis it is much more 
difficult to define a memory and meaning than after the actual crisis has ended . 
The HIV/AIDS-affected community therefore needs a constant, continuous, and conscious effort 
to build an HIV/AIDS-affected communal memory. The community needs the knowledge of 
what it wants to say, in order to find a voice to actually communicate it. 



C.5.2: In the village of grief 

In the Village of Grief this aspect is articulated in the Statue on the Main Square. This is the first 
stop in the narrative of the Village. At this point the grieving individual or community 
acknowledges that there is somebody or something to grieve for. This is not always self-evident, 
as I will show in the discussion of unacknowledged and unclear loss and of avoidance. The 
Statue also represents what is grieved at this specific moment. It is therefore important for the 
individual to visit and revisit this statue regularly during ones time in the Village in order to 
reexamine what or whom one grieves. This can and will change over time. For a community it is 
also important to constantly redefine and re-describe this statue to maintain a commonly agreed 
on center for the communal experience of grief. 



9Q 

Schartzberg,: "During a crisis, people typically suppress their emotions to function effectively. 
It is when the thread recedes that deeper feelings emerge, and must be reckoned with. The same 
holds true, in large part, with an ongoing trauma such as AIDS: Even with the burden of grief 
that colors the day, we are still in crisis mode. The actual depth of our anguish has not yet been 
voiced." 222. 



38 



C.5.3: The HIV/AIDS-affected community as a community with a ritual life that 
keeps the memory fresh 

The process of building a communal memory is also the process of keeping this memory alive, 

fresh and meaningful. This is a communal effort that needs the gathering of the community and 

simultaneously builds the community. Those gatherings can be understood as rituals. The 

Compact English Oxford Dictionary defines "ritual" as: 

"noun 1 a religious or solemn ceremony involving a series of actions performed 
according to a set order. 2 a set order of performing such a ceremony. 3 a series of actions 
habitually and invariably followed by someone." 

To keep the communal memory fresh, the HIV/AIDS-affected community has to develop 
and maintain therefore a set of meaningful, repeated communal experiences that maintain a 
certain recognizable order, occur in a certain regularity, and are accessible to the community. 
This can happen in repeated ritualized gatherings of the community, such as the observance of 
World AIDS Day, displays of the NAMES project, and easily accessible symbols like the RED 
Ribbon, but also through many expressions of art. It is a similar experience to building the 
memory, although it is aimed more at the repetition of the already existing communal memory 
rather than the hearing of new individual memories. The practice of those rituals keeps the 
memory fresh and communicates it to the following generation, 31 who then in turn might develop 
their own rituals. This also includes rituals of expressions of grief. Especially in the expression 
of grief, the HIV/AIDS-affected community has given voice to so many individuals grieving for 



in 

For the description of those examples see below. 
31 See: Shattuck and Thompsett, 95-96. 



39 



loved ones that have passed away at a very young age that it already has changed the way people 
organize funerals and express their grief in many western societies. 

The HIV/AIDS -affected community therefore needs to establish and practice meaningful 
rituals of an HIV/AIDS-affected communal memory. It needs to develop a language and a voice 
in which the memories of the past and the experiences of the present can be expressed and heard 
in the present and the future. And it needs to develop a consciousness as an audience that hears 
and understands this voice and combines the individual memories to a communal memory. 



D.5.4: The HIV/AIDS-affected community as a community with a passion for 
justice. 

A scriptural community does not exist purely in order to perpetuate or defend its own existence. 
It always has purpose. While the memory grows from the past into the present, the passion for 
justice is deeply rooted in the present and aims for the future. It is the attempt to change its own 
community and the world towards the better. 

In the HIV/AIDS-affected community this passion for justice finds its expression in a 
struggle for non-discrimination, non-stigmatization, equal access to medical and social benefit, 
worldwide equality and justice in the fight against AIDS, and the access to benefits. In the 
HIV/AIDS-affected community the experience of grief often leads to individual or communal 
passion for justice. The fight for justice became a strategy of grief and coping with grief. 
Examples of the passion for justice are the actions of ACT UP. Especially during the political 



40 



funerals 32 in New York and Washington/DC, the grief of the participants was transformed into a 
radical expression of passion for justice. 

The HIV/AIDS-affected community therefore needs to continue to maintain a passion for 
justice. It is a still ongoing process and still a necessity for the HIV/AIDS-affected community. It 
needs to transform the voice of grief and experiences of past and present into a voice of hope for 
itself and the world. 



C.5.5: The HIV/AIDS-affected community as a community with a commitment to 
love. 

By its very nature the HIV/AIDS-affected community in its grief is rooted in the experience of 
love. The individual grief is usually a reaction to the loss of a loved one. 

On many levels the HIV/AIDS-affected community is motivated more by fear than love. 
Here are a few examples: the fear of infection, the fear of loss of a loved one, the fear of 
stigmatization or discrimination, and the fear of exclusion. This fear leads then to reactions that 
can be self-destructive and restrain freedom. 

■5-3 

The deep commitment to love that is a common thread in all religions and is expressed 
in the scriptural quotation: "You shall love your neighbor as yourself (Mark 12:20-31) which 
offers an alternative to the fear-motivated thinking. The love of self and others is much more 
effective as a motivation for prevention than fear. If individuals love themselves and others as 



The political funerals will be discussed in detail later. 
33 See Thich Nhat Hanh for a Buddhist voice. 



41 



themselves, they will behave safely, not out of fear, but out of love. If the individuals focus on 
love instead of the fear of loss, they will be able to live in that love much more fully. In the case 
of loss, which is an inevitable human experience, the grief can be experienced with love. In a 
community that focuses on the love of the other, stigmatization, discrimination, and exclusion 
will be identified as non-love and therefore challenged. 

The HIV/AIDS-affected community therefore needs to develop a self-understanding as a 
community governed by love. It needs to experience the challenges of the HIV/AIDS crisis 
including the HIV/AIDS-related grief as a problem of love rather than of negative emotions. The 
voice of the HIV/AIDS-affected community needs to be a voice of experienced and expressed 
love. 



C.5.6: The HIV/AIDS-affected community as a community with a mission 

A scriptural community is not only a community of past and present, but also is conscious about 
its own future and moves towards this future. If this move into the future has a conscious 
purpose, the community has a mission. 

The HIV/AIDS-affected community could be understood as a community that is purely 
build on a shared experience without a sense of purpose or mission. Most individual relations to 
the HIV/AIDS-affected community are rooted in the past and in experiences with HIV/AIDS. 
Few individuals become members of this community because their relation to the HIV/AIDS or 
the community is purely build on a mission. The individuals happen to find themselves in this 



42 



community and the main task is to cope with that situation and survive. Yet this would be a 
communal existence that denies the future. In the same way as the past can be remembered, and 
the present can be experienced individually or communally, the mission can be a individual 
choice as well as a communal agreement. A purpose and a mission for a community are not 
always self evident but need to be found and need to be lived into. 

A community without a mission is only determined by its past and present. For such a 
community, the future is something that can only be experienced passively. With a mission the 
community gains a certain control over its own future. It knows that it can and will shape and 
change the world. 

The HIV/AIDS-affected community therefore needs to find and live its mission. As a 
community born of the experience of a life-threatening crisis, it needs to use its voice to be a 
changing force for the individuals that will become members of it in the future. Ultimately the 
HIV/AIDS-affected community needs to call for the end of its own existence. 



C.5.7: Conclusion 

In order to be heard in a meaningful way the voice of both the individual within a community 
and the community itself need a specific kind of community. The way we think about this 
community determines the meaning of that community and of our relationship to it. 

In the understanding of the HIV/AIDS-affected community we need to think about it as a 
mobile/relational community in order to include as many individuals as possible with their 



43 



individual experiences and their changing relationships with each other and with HIV/AIDS. 
Already the ongoing discussion of self placement and the placement of self through others in the 
community is an effect the community has for the individual, the community, and the world. It 
shows the individuals that they are responsible for their own position in the community and that 
they are not placed into categories purely by outside forces. 

In order to fulfill a meaningful purpose for its members and for the world the HIV/AID S- 
affected community needs to become a scriptural community. The community needs to think 
about itself as a scriptural community. Not necessarily in a biblical sense, but with the attributes 
of a scriptural community. 

It is therefore the responsibility of churches and other religious and spiritual communities 
as communities that are conscious and knowledgeable about those attributes to help support and 
teach the HIV/AIDS-affected community. And it is the responsibility of the HIV/AIDS-affected 
community to grow into being a scriptural community. Its way of dealing with its own 
expression of grief within those frames can then become healing and can eventually lead to the 
change of the world. 

Verna Dozier concludes her discussion of the scriptural community with a warning that in 
reality is a promise: "I think scripture communities can change the world. I also think that you 
should be warned that scripture communities can shake up the even, complacent tenor of your 
lives." 34 



34 Shattuck and Thompsett, 98 



44 



D: Different expressions of grief as reaction to different types of loss. 

Loss is a part of the human existence. As humans, we experience different types of loss: the loss 
of a loved one through death or separation, loss of youth or dreams, loss of job, loss of 
possessions, and many more. Basically every moment that passes is a moment of the presence 
lost to the past. All of those different losses change our lives. We can experience that loss and the 
resulting change as individuals but also as communities. Grief can be understood as a reaction to 
loss and a way to adjust to the change brought through loss. 

According to Stroebe 35 we can describe two main areas of emotional reactions to grief: 
The "Loss orientated" area and the "restoration oriented" area. Loss orientated reactions are: 
regret, sadness, fear, hopelessness isolation, feelings of guilt, preference to dwell in memories, 
acknowledgement of grief, and mourning. Restoration orientated reactions include: feelings like 
hopefulness, gratefulness, the desire to move on, the making of plans, looking into the future, 
hunger for normality and the desire to take time off from grief or taking a pause from grief. 
For the purpose of this thesis, I understand the loss and the reaction to loss as one experience that 
has implications for the past (loss oriented) and the present and future (restoration oriented). 

In the following I want, in a first step, to discuss the communal experience of loss in the 
HIV/AIDS-affected community itself. In a next step I want to address several different reactions 
to the communal experience of loss in the HIV/AIDS 36 affected community. I want to discuss 



See: Margaret S. Stroebe, Handbook of Bereavement Research : Consequences, Coping, and 
Care. (1st ed. Washington, DC: American Psychological Association, 2001). 
6 1 am aware that the experiences of HIV and AIDS are different experiences. For the purpose of 
this paper I want to address HIV/ AIDS as one developing, cumulative, and holistic experience. It 



45 



one way of grieving through remembering and creating community in creativity (the AIDS 
Quilt); one way of grieving through addressing helplessness, rage and anger in conflict (Political 
funerals); one way of addressing grief at regular times (world AIDS Day); and one way in 
actually creating and building up the HIV/AIDS-affected community (AIDS Ribbon). 



D.l: Multiple ongoing loss 

The main characteristic of the communal grief experience in the HIV/AIDS-affected community 
is that of multiple and ongoing loss/change. This is different from single individual loss which is 
usually singular and clearly definable (the loss of one loved person to death, for example). For 
individuals in the HIV/AIDS-affected community this situation is different. Many of them have 
experienced an overwhelming number of individual losses that changed their personal, social, 
cultural, economical, and spiritual environment. These multiple individual losses eventually 
became one cumulative grief experience, the individual losses became indistinguishable. To 
grieve those multiple losses individually becomes extremely difficult and can change into one 



does not begin with the HIV infection, but much earlier and does not end with a AIDS-related 
death, but continues. I will also concentrate on a mainly white, western, male experience for the 
purpose of this thesis. 

17 *-i 

See: David Nord. Multiple AIDS-related Loss : A Handbook for Understanding and Surviving 
a Perpetual Fall. Series in Death, Dying and Bereavement. Washington, D.C: Taylor & Francis, 
1997), 86-88. 



46 



TO % 

ongoing experience of grief. Individuals cannot concentrate or complete the normal grief 
process for each individual loss experience. 

The communal HIV/AIDS grief experience is also an ongoing experience. The 
HIV/AIDS-affected community still is in the process of the loss experience and therefore it has 
to grieve and experience the cause for that grief simultaneously. Most grief theories understand 
grief as a process that begins with the loss and moves on from there. This does not apply at all 
for the HIV/AIDS-affected community. It works on its grief and tries to reach another level, but 
can not move forward. It can be compared to a person standing on ice being tied with a rope to a 
pole. This person is setting one foot in front of the other and spends a lot of energy walking, but 
remains on the same spot. 



D.2: Stigmatized and unacknowledged loss 

Inside and outside the HIV/AIDS-affected community the loss and its consequences are often not 
acknowledged. Some members of the community, or the community itself, are seen as not 
having a legitimate cause for grief, because there was no direct personal connection to the loss. 
Often the community does not support such grief, or even looks down on or shuns expressions of 
grief. This can occur when the personal relation to the lost person was not communally known, 



"Survivors regularly say that they do not know for whom they are grieving. Recall Terry 
saying that sometimes a person dies "who I didn't really have a connection with at all, but brings 
on a floodgate." All of their grief gets rolled up in one collective grief." Ibid., 87-88. 

"Survivors lack the time necessary to complete a normal bereavement process." Ibid., 87. 



47 



accepted, or seen as legitimate. Examples for such unacknowledged relationships can be 
extramarital lovers, former spouses, or people living in gay relationships. 40 
Loss without the experience of direct personal loss also is often unacknowledged. Both the 
individual and the community do not readily acknowledge that kind of loss, making it extremely 
difficult to deal with it. 

HIV and AIDS still are stigmatized and many who have lost a loved one to AIDS cannot 
acknowledge that fact to their own community. The Quilt has created a possibility for those 
individuals to publicly accept and express their grief, 41 the political funerals gave voice to the 
anger and frustration about the stigmatized and unacknowledged loss/change. 



40 Barbara M. Newmann: "The bereavement process is influenced by a society's interpretation of 
who the legitimate mourners are and who has experienced a legitimate death. Some people who 
grieve might not be recognized as legitimate mourners. These might include former spouses, 
foster children, persons in a gay relationship, professional caregivers, extramarital lovers, 
families of addicts, and people who have had abortions. When communities do not sanction their 
grief, it might be difficult for these people to acknowledge that they have suffered loss or 
experience closure after death. These unacknowledged mourners might be confused about their 
status and feel guilty or embarrassed by their attachment to the dead person." 583. 

41 Cleve Jones recalls an African American woman who showed up at the Quilt workshop in San 
Francisco. "She'd come on a Greyhound bus from a small town in Kentucky. A year and a half 
earlier, her oldest son had returned from Los Angeles, where he'd settled after being discharged 
from the army. He'd come home to die. Though she was the choir director at her church and had 
a large, close family, she cared for her son for a year without ever revealing the nature of his 
disease to anyone." Cleve Jones and Jeff Dawson, Stitching a Revolution: The Making of an 
Activist. HarperOne, 2001 140. 



48 



D.3: Unclear loss (without the direct individual experience of loss.) 

For many in the HIV/AIDS-affected community the loss is very clear and well defined. It is the 
loss of a loved one to AIDS and the change that loss has brought to our lives. For many that loss 
has not only happened once, but many times. 

Other losses are much less defined and only can be described with much more difficulty. 
Especially the younger generation, those who have become members of the HIV/AIDS-affected 
community after the advent of combination drug therapies after about 1996 have a different 
experience. They often have no first-hand experience of losing many friends and loved ones. For 
them those multiple losses are part of history. They therefore have no real experience of multiple 
personal losses, but they have to live with the change this loss has brought. These losses and 
changes are less individual 42 and more communal. This means that the culminating effect of 
those experiences that might be comparatively insignificant for the individual become 
increasingly important for the communal reaction. 

There are many different communal losses that form no particular order or hierarchy but 
rather form an amorphous experience of loss. In the following I want to focus on the communal 
aspect of these losses. 



In his book Multiple AIDS-Related Loss, David Nord discusses a list of losses for the 
individual: Loss of family, friends, lovers, and acquaintances; Loss of personal history; Loss of 
future; Loss of security; Loss of emotional range and well-being; Loss of hope; Loss of interest 
in life; Loss of self-esteem; Loss of roles; Loss of spirituality, meaning, and assumptions; Loss 
of privacy; Loss of community; Loss of celebration sexual freedom. See: Nord, 46-51. 



49 



D.3.1: Loss of history and future 

The HIV/AIDS epidemic is a formative experience for many in the HIV/AIDS-affected 
community. HIV/AIDS became an overwhelming signifier for their life experience. Especially 
gay men became so identified with HIV/AIDS that the communal knowledge of other parts of 
the homosexual history is not very wide spread in the HIV/AIDS-affected community. With the 
multiple loss of individuals, a lot of individual memories and possibilities to exchange those 
memories were lost. The focus on the HIV/AIDS experience took up communal space which is 
then not available to remember other important history. At celebrations within the HIV/AIDS- 
affected community it became customary and a ritual to remember the ones we lost to AIDS. 
With this the community not only introduces grief and loss into celebrations. The community 
also had to take that time and space for the AIDS remembrance which then could not be used for 
the remembrance of other parts of our history. 

The same can be said about the future. A lot of planning and hoping for the future in the 
HIV/AIDS-affected community focuses on the HIV/AIDS experience, therefore using up 
communal time and space that cannot be used otherwise. 



D.3.2: Loss of potential 

With the loss of so many individuals to a untimely death, there is also a loss of what those 
departed ones could have accomplished. Many individuals died way before they could have 
fulfilled the social role they could have grown into, if they would have lived. With these losses 



50 



the HIV/AIDS-affected community in particular and the wider society in general lost much. 
Many of the AIDS victims have been or would have become contributors to the arts. How much 
individual art, literature, poetry, performance and so on would have been developed by those 
who have died so early in life? Many AIDS victims became involved as young persons in 
politics through the gay rights movement in the 1970. Many of them could have become political 
leaders even in mainstream politics if they had lived to harvest the fruits of their labor. What 
would our political landscape look like, if they would have lived? Many of the AIDS victims 
could have become role models, mentors, superiors and helpers to the younger generation of gay 
men and women to come. What would the personal lives of those who are now members of the 
HIV/AIDS-affected community look like, if they were instead members of a healthy 
sociological, cultural, and economic network of openly living gay men? 

Faced with those realizations, one can only ask rather futile rhetorical questions. There is 
no answer to those questions. One cannot estimate the effect the loss of so many young people 
has to a society. Yet this loss is very real and although it might not be evident to the individual 
it is nevertheless a change brought through loss which the HIV/AIDS-affected community has to 
deal with and has to grieve. 

This is, of course, true for many situations where lots of people are lost to the society. 
Losing whole generations to war or natural disaster raises the same questions. The loss to 



The economic effect the AIDS crisis has in many developing countries, though, is very much 
measurable and devastating. Many African economies suffer dire consequences. Those changes 
are not part of this thesis for reasons of space only. 



51 



HIV/AIDS is by no means singular or exclusive. Yet every affected community and society has 
to find its own way of adequately responding and its own ways to grieve. 



D.3.3: Loss of sexual freedom 

The gay liberation movement in the late 1960s and early 1970s was political movement but also 
a movement of sexual freedom. 

The availability of antibiotics, especially after World War II, made the treatment of 
sexually transmitted diseases a rather uncomplicated matter. Between the invention of mass 
produced penicillin in the 1940s and the discovery of the HI Virus in the early 1980s basically all 
sexual transmitted diseases became treatable. The wide spread availability of the contraceptive 
pill in the beginning of the 1960 and other contraceptive methods supported a change in sexual 
behavior not only among gay men. A growing sexual freedom was an experience of the whole 
society. This area also saw the growth of gay neighborhoods that allowed many gay men to 
develop sexually liberated lifestyles. 

The younger generation has no first-hand memory and experience of a world without 
AIDS as it was before the 1980s. This younger part of the HIV/AIDS -affected community has 
never communally experienced the effect of a growing sexual freedom after a long experience of 
sexual oppression. There might be an experience of a growing individual sexual freedom as part 
of a coming out process. But they lack the communal experience of the older generation. The 
Stonewall events and the years between then and the rise of HIV/AIDS with a growing sexual 



52 



freedom and many possibilities of sexual expressions are part of history, not only of personal 
memory and experience. They did not live through the loss of sexual freedom in the demands of 
a growing and changing necessity for safer sex. Instead they sexually grew up with the necessity 
of using condoms as a part of their sexual experience. The older part of the community has 
experienced the necessity-enforced change of behavior as loss of many freedoms they had fought 
for or grown up in. For them this change in behavior was a loss of freedom. 

The younger part of the HIV/AIDS-affected community has no experience of HIV/AIDS- 
related change of behavior. They have no personal experience of loss, but the have to live with 
the effects of that loss, the change in behavior. Still the reality of the loss and the change is part 
of the life of the HIV/AIDS-affected community, even if the individual might not have a distinct 
experience of that loss and change. This loss and change therefore is much less well defined and 
therefore is very difficult to deal with. 



D.3.4: Loss of fear free intimacy 

The fear of contagion that is at the core of the loss of sexual freedom also includes the loss of 
fear-free intimacy. Intimacy is a very complex experience with many levels of communication 
and sexuality is an important expression of that communication. During the time of sexual 
liberation in the whole society, a cultural emphasis was placed on the fact that sexuality was a 
rather care-free expression of intimacy. The rise of HIV/AIDS rather abruptly changed that 
perception. Sexuality in general, and sexuality between men in particular, became, by definition, 



53 



a potential life-threatening behavior. 44 Many HIV/ AIDS prevention programs communicate that 
very clearly. Therefore there are two conflicting meanings to sexuality: life-affirming on the one 
side, life-threatening on the other side. 

Sexual encounters in general, and especially invasive sexual intercourse, are by their nature the 
ultimate expression of intimacy. One is in a deep sense naked, exposed to the other. In a certain 
way the participants in this sexual encounter open their very body to be entered by the other. By 
engaging in such sexual behavior one communicates and wants to communicate a certain level of 
trust and intimacy. 

On this level the condom becomes the symbol of mistrust. By using a condom the 
partners communicate to each other that they do not trust each other. The unspoken 
communication is not one of love, respect, and openness. The condom does not say: "I value you 
and myself so much that I take every possible measure to protect you and me by using a 
condom." On a deep level, it necessarily communicates the opposite, mistrust and fear 45 : "I 
assume that you, my partner in intimacy, are HIV positive and therefore a danger to my life." 
The condom as a symbol for "safer sex" introduces fear and mistrust into a moment that by 
definition should be fearless and trusting. 

This is especially true for loving and trusting relationships. The condom is not only a 
physical barrier but also a symbol for an emotional and personal barrier. The desire to avoid or 



: "Sex between gay men becomes necessarily risky. Hence, the loaded and dangerously 
distorted, Know your partner. But to the extent that being a gay man means having (had) sex 
with other gay men, being gay is a priori risky." Steven Ball, 93. 

"For a gay man to use (or demand that a partner use) a condom, is to invoke contagion: If one 
needs to have safer sex, one must be infected." Ibid., 98. 



54 



overcome this emotional and personal barrier might be a reason for the fact that inside of 
perceived monogamous relationship the use of condoms is less than consistent. 
But also in so-called causal or anonymous sexual encounters this often unspoken communication 
takes place, distorting the meaning of sexuality profoundly. 47 

The assumption that the person I engage in sex with is HIV-positive, which is the basic 
assumption of safer sex, also leads to another aspect of fear of intimacy. It is the fear of 
becoming intimate on a deeper level and then losing a loved one. Every time an individual in the 
HIV/AIDS-affected community engages with another individual, they have to face the fact that 
that person might suffer illness and die prematurely. 

The HIV/AIDS-affected community, especially among gay men, has suffered 
tremendously from this fear. Not necessarily on a individual level but communally, sexuality has 
changed from a celebration of life and identity to a heavily problematic field directly connected 
to death and loss. The loss of fear-free intimacy is a very unclear loss, especially in a generation 
of the HIV/AIDS-affected community that grew up with the messages of safer sex, and therefore 
never having experienced a fear free intimacy and sexuality. 



"It has been empirically demonstrated that a great deal of serotransmisson occurs in couples, 
as condom use is more inconsistent than in sex practiced outside of a relationship." Ibid., 97. 

"Communication around sex, already so difficult, is made vastly more distorted and loaded in 
the unstable and contestational field of the language of AIDS - particularly as manifested in the 
HIV-positive/HIV-negative dichotomy. What results from this instability is a clear double bind: 
In calling for safer sex (behavior), one is marked (and identified) as risky." Ibid., 98. 



55 



D.3.5: Conclusion: 

The sum of HIV/AIDS-related loss is more than the adding up of its individual losses and 
changes. It has more than a purely additive cumulating effect. The loss/change experience of the 
HIV/AIDS-affected community is a loss/change experience in its own right that has to be 
understood as an unprecedented loss. It is possible to describe the contributing factors to this loss 
experience which can then be addressed one by one. But they are only parts of the whole 
experience which should be understood as a whole and new experience. 

The traditional means of defining and expressing grief, especial communally, do not 
apply here. It was and is, therefore, important that the HIV/AIDS-affected community develops 
its own grief strategies to express this grief. In the following I want to describe several of these 
grief strategies. They all developed in a certain historical, political, cultural moment as a reaction 
to a certain aspect of the grief experience, for example the need to name and remember the 
victims or express the rage and anger of grief. None of them are therefore the ultimate grief 
strategy for the HIV/AIDS-affected community. But they can serve as examples for the 
development of communal grief strategies. I will also show that they grew beyond their initial 
function and addressed other parts of the HIV/AIDS-related grief experience and indeed helped 
to create the HIV/AIDS-affected community. 



56 



E: Places and times for memory 

Depending on the actual cause of grief, there are different ways to grieve that become important. 
Some of them can be addressed creatively. In other instances it is important to not have too much 
creativity in the grieving process. In a time of change and turmoil, a time of not being certain of 
what to do, the security of ritual becomes important. Most cultures have rather clear rituals and a 
culturally clearly-described set of behaviors in the event of change that causes grief. 

Other losses and changes are less well defined and therefore require a much more creative 
approach to change. The change which the HIV/AIDS-affected community has experienced was 
and still is unprecedented and has, especially because it is an ongoing crises, only a few 
ritualized reactions that helped to create a sense of normality and stability. 

In the following I want to describe several communal grief reactions. To describe them I 
follow a historical approach. This means that I look at them as reactions that were created and 
designed in a particular time and cultural space. Some of them have continued their significance 
to the present; others have a rather clear beginning and end. It is the advantage of the historical 
view that one can identify the roots of a phenomenon once it is identified as a wider movement. 
This can be rather easy for well-recorded and analyzed projects such as the AIDS Quilt. An 
adequate description and analysis becomes more and more difficult the closer one comes to the 
present. I have chosen the following examples because of my estimation of their importance to 
the HIV/AIDS-affected community, because of amount of supporting information I could access, 



57 



and because of different aspects they illuminate. In placing them in a first step in the village of 
grief I want to connect them to my guiding understanding of communal grief. 



E.l: The AIDS Quilt 48 



E.l.l: In the village of grief 

The central figure in the village of grief, around which everything else is built and focused, is the 
statue that resembles the one we grieve. It reminds all who are in the village who and what the 
focus of the grief is. It also serves to keep those we grieve in our midst and in our personal and 
communal conscience. Due to the very multidimensional nature of the loss to HIV/ AIDS, one 
single statue or symbol could not be enough. For the HIV/AIDS -affected community the central 
focus point had to take on an adequately complex and multidimensional form. The closest 
resemblance of this imaginary statue in the our real world was found in my opinion in the AIDS 
Quilt. 



E.1.2: The history and structure of the AIDS Quilt 

The AIDS Quilt 49 was first envisioned by Cleve Jones, who previously had worked with 
Supervisor Harvey Milk, on November 27, 1985, the night of the memorial march to 



48 Officially called the "The AIDS Memorial Quilt" organized by "The NAMES Project 
Foundation." In the following I will refer to it as "AIDS Quilt". See: www.aidsquilt.org. 



58 



commemorate the assassination of Harvey Milk and Mayor George Moscone in 1978. By then 
about 1,000 persons in San Francisco had died of AIDS. 50 The organizers of that march had 
asked participants to write down names of persons who had died of AIDS on poster boards. 51 
Those boards then were placed onto the front facade of the Federal building that housed the 
offices of Health and Human Services on Market Street in San Francisco. With this the names of 
the AIDS victims should be remembered at that occasion. This simple but effective and 
impressive display of names on poster boards on a wall sparked the idea for what would become 
the AIDS Quilt. 52 And although the AIDS Quilt is the idea of one single person, Cleve Jones, it 

49 Since the beginning of the AIDS crises many places, opportunities, and times of memory were 
created. The National AIDS Memorial Grove in Golden Gate Park in San Francisco/CA, the 
Gedenksteine (stones of remembrance) in many German cities, and the many moving accounts of 
memories in literature are only a few of them. I have chosen the AIDS Quilt as the example for a 
creative response because it is the largest, best recorded, and, in my personal opinion, the most 
impressive example. It would require and call for a separate piece of research to describe and 
analyze all places and times of remembrance to HIV/AIDS. 

1 ". . . and I picked up a Chronicle. The front page headline was chilling: "1,000 San Franciscans 
Dead of AIDS." I'd known most of them from my work with the KS Foundation. Virtually every 
single one of them had lived within a ten-block radius of where we were standing at Castro and 
Market." Jones and Dawson, 104. 

51 "November 27, 1985, the night of the memorial march, was cold and grey. As we waited for 
people to gather, Joseph and I handed out stacks of poster board and Magic Markers, and through 
the bullhorn I asked everyone to write down the name of a friend who'd been killed by AIDS. 
People were a little reluctant at first, but by the time the march began we had a few hundred 
placards. Most of the marchers just wrote first names, Tom or Bill or George; some of the signs 
said "My brother" or "my Lover," and a few had the complete name - first, middle, and last - in 
bold letters." Ibid., 105. 

"I ended the chanting ("Stop AIDS now! Stop AIDS now!") and explained through the 
bullhorn that we were going to plaster the facade with the posters inscribed with our dead. And 
that's what happened. The crowd surged forward, the ladders were set in place, and we crawled 
up three stories, covering the entire wall with a poster-board memorial. 
It was a strange image. Just this uneven patchwork of white squares, each with handwritten 
names, some in script and some in block letters, all individual. We stared and read the names, 



59 



nevertheless was from the very first moment of the idea a deeply communal experience. It took a 
large part of the HIV/AIDS-affected community to create the Quilt. 

The AIDS Quilt consists of individual three feet by six feet panels, mainly made of 
different fabrics. They show the name of the person who is remembered on it and any personal 
information the panel maker chooses to include. The panel makers are also encouraged to 
include a personal letter about the individual Quilt panels and the person remembered. These 
letters have become an important interdependent part of the AIDS Quilt. 

The individual panels are then put together into larger sections of 8 panels which then 
form the larger Quilt. These 12 foot squares (commonly called "twelve-by-twelves") are the 
common size for public displays of the Quilt. 

The AIDS Quilt developed several unique grieving rituals, especially around the public 
viewings of the quilt. Some of those rituals developed spontaneously, others are the result of 
conscious planning and design. Many of those rituals date back to the first public viewing of the 
Quilt in Washington, D.C. and San Francisco in 1987. Those viewings are examples of those 
rituals. For those public displays the Quilt was laid out on the ground, with four 12 foot squares, 
each consisting of eight individual panels being surrounded by a canvas walkway. This allowed 



recognizing too many. Staring upward, people remarked: "I went to school with him" . . . "Didn't 
know he was dead" ... "I used to dance with him every Sunday at the I-Beam" . . . "We are from 
the same hometown" . . . "Is that our Bob?" 

There was a deep yearning not only to find a way to grieve individually and together but also to 
find a voice that could be heard beyond our community, beyond our town. Standing in the 
drizzle, watching as the posters absorbed the rain and fluttered down to the pavement, I said to 
myself, It looks like a quilt. As I said the word quilt, I was flooded with memories of home and 
family and the warmth of a quilt when it was cold on a winter night." Ibid., 106-107. 



60 



the visitors of the Quilt to walk around the display and never be further away from an individual 
panel than 12 feet. 

For the initial presentation an Opening Ceremony developed. It is a very simple but 
effective way to unfold those squares. The folded twelve-by-twelve sections are placed in a 
folded form, the so called "lotus fold" in the middle of the place where they are going to be 
displayed. A group of eight volunteers then unfolds the section from the centre to the outside. 
The volunteers are usually dressed in white, thus remembering the many nurses, women and 
men, who have cared for people dying of AIDS. 53 The section then is lifted up, turned a quarter 
to the left and placed in its final position. This turn developed out of a mistake in the original 
laying out of the Quilt, but is now a permanent part of every display procedure. 54 
During the opening ceremony and the display of the Quilt, the names of those remembered on 
the individual panels are read by volunteers. 

Another ritual focuses on the addition of new panels to the Quilt. At the end of a display, 
when the displayed parts of the quilt have been refolded and stored away, new panels are 
included. If possible they would be handed over by the panel maker to an volunteer who then 
would place it on the ground and by that including the new panel into the community of those 
who are remembered in the Quilt. 55 In 2009 the quilt contains over 91,000 names, which 



53 Ibid., 131. 

54 Ibid., 133. 

55 Ibid., 155. 



61 



represents approximately 17.5 % of all U.S. AIDS deaths. The quilt was visited 6y over 18 



million people. It has international chapters and is still growing. 



56 



E.1.3: The AIDS Quilt as a communal experience 

For the HIV/AIDS-affected community especially in the USA, the AIDS Quilt gave a creative 
outlet to the loss and change brought through HIV/AIDS. To quilt is a communal experience and 
to do so especially in times of loss and grief is an experience that has its roots in the early 
American tradition. Families and friends came together to share in the communal experience of 
creating a quilted comforter, thus not only remembering the loss but also communally creating 
something comforting, in the real sense of the word. 57 The AIDS Quilt therefore is not only an 



56 Source: The NAMES Project Foundation, www.aidsquilt.org 

A impressive account of that deep association in American culture can be found in Rob Baker, 
The Art of AIDS. (New York: Continuum, 1 994), 149: "Like Aunt Ida in Melvin Dixon's poem, 
each quilter chips away at that silence. Aunt Ida is shocked at first when she hears her nephew 
Junies's quilt is going to displayed: "A quilt ain't no showpiece," she insists. "It's to keep you 
warm. Francine say it can do both." And perhaps even more: 

Francine say she gonna send this quilt to Washington 

like folks doing from all 'cross the country, 

so many good people gone. Babies, mothers, fathers 

and boys like our Junie. Francine say 

they gonna piece this quilt to another one, 

another name and another patch 

all in a larger quilt getting larger and larger. 

Maybe we all like that, patches waiting to be pieced. . . 

Now where did I put that needle?" 

Melvin Dixon, "Aunt Ida Pieces a Quilt," in Confronting AIDS Through Literature, edited by 

Judith Laurence Pastore (Urbana: University of Illinois press, 1993) 



62 



eg 

experience in and of itself, but carries a lot of communal associations. This might be the reason 
that the AIDS Quilt became a mainly American experience. There are international chapters of 
the Quilt in many countries, but the overwhelming majority of the panels are created in the US. 59 

The Quilt is a creative way of remembering both individually and in the community on 
several different levels. On a first level, like in historical quilting, the individual panels were 
created by groups of people who shared the individual loss. With this already, the making of the 
panel itself can be a communal expression of grief. The individual panel is then added to the 
larger Quilt, by that adding both the panel maker and the person remembered into a larger 
community. The displays of the Quilt offer another communal experience. People who come to 
visit the quilt often do so in groups, thus becoming a part of the community that gathers around 
the quilt. 60 

With this the Quilt not only served but also created several parts of HIV/AIDS-related 
community: It created the community of the makers of the actual quilt panel, the circle of friends 
and family, who create a symbol of the one lost. It also created the community of all those who 



CO 

"As I said the word quilt, I was flooded with memories of home and family and the warmth of 
a quilt when it was cold on a winter night." Jones and Dawson, 107. 

9 This is also an indicator, that the communal HIV/AIDS experience has to be distinguished in 
many different cultural expressions. For the purpose of this paper I mainly concentrate on the 
predominantly white US American experience because of the resources and the space that is 
available to me. 

"The author visited the 1996 Quilt display in the Mall and was impressed by the support 
available to the families, friends, and observers. A continual cadence of names was read over 
loudspeakers that surrounded the Mall. The coordinators gave the readers a list to read, and at the 
end the reader inevitably added the names of their own loved ones. All over the Mall, one could 
observe clutches of people hugging each other, sharing each other's grief, and healing." Nord, 
224. 



63 



gathered around the displays of the quilt, and who placed their own individual grief into the 
communal grief of the HIV/AIDS-affected community. In putting the names and personal 
attributes of the individuals that died of AIDS on the individual panel and adding those together 
in a large Quilt, the AIDS Quilt actually created a sense that those, so far, connected only 
through common cause-related deaths are forming a transcendental community of all those who 
have died of AIDS. 

The Quilt also formed a community of solidarity between the living and the dead. In 
placing the individual panel onto the Quilt, the living promise to not forget the dead and 
everything that made their lives individual and important. The quilt gives those who have already 
died a place in the HIV/AIDS-affected community. It also signifies the acknowledgment that 
living ones are in the same community as the dead. There is always the possibility for the living 
ones that one day they themselves could cross over and be placed onto the Quilt. 61 



This fact is very impressively formulated in a song by Eve Goldberg and Cathy Fink. Thanks 
to the Names Project foundation for finding that quotation for me. 

A patchwork of thousands of precious names 
There must be someone that you know 
Woven together in a quilted frame 
Names the loved ones won't let go 

Chorus: 

And I know that my name could be there 

And I feel the pain and the fear 

And as human love and passion do not make us all the same 

We are counted not as numbers but as names 

We grieve for the lovers and the families 
And I pray they'll meet again someday 



64 



E.1.4: Critique of the Quilt 

As an expression of communal grief, the Quilt remained not without criticism. It was criticized 
for being too focused on the dead, instead of those still living. It was called a "pyramid built on 
bones' or was called "AIDS kitsch" for being to soft and not angry enough . Another type of 
critique and conflict around the quilt also arose when there was one group or individual who had 
made a panel and wanted to include the name of a lover in the Quilt and another group or 
individual did not want to allow that. Those panels usually would be included, but the names 
themselves be covered, by that creating its own powerful reminder of the ongoing stigmatization 
of people living with HIV and dying of AIDS. 



E.1.5: The Quilt as an expression of anger and conflict 

The Quilt also served as an expression of outrage and anger and was used as a instrument of 
conflict with the failure of the political system, represented by the silence towards HIV/AIDS by 



But until that time I will carry the flame 

As the numbers grow we'll not forget their names 

A lover, a carpenter, a father, a friend 
A sister, a minister, a mom 
Each quilted piece holds a memory 
Each memory helps us to go on. 

In: Ever Brightening Day (CD) by Eve Goldberg and Cathy Fink 

62 



Jones and Dawson, Stitching a revolution, 168. 
63 Ibid, 167. 



65 



president Reagan. 64 The presence of the Quilt in Washington, D.C. was a powerful plea for help 
and support that was neglected. With their silence President Reagan and President Bush sent a 
powerful message to the HIV/AIDS-affected community and showed that they did not want to be 
touched by the suffering and the grief of so many. Here the Quilt served as a catalyst and 
expression of anger and conflict. 65 



E.2: ACT UP! The Political Funerals in the US 

E.2.1: In the village of grief 

With the political funerals we move into the Smith-shop in the village of grief. The reaction to 
HIV/AIDS is often violent, both personal and communal. Grief also can find rather violent 
expressions. This can be seen as a natural reaction to the experience of being helpless in the 
situation of grief. Not everybody needs to go to this place, but for some it can be a healthy place 
and experience. During the 1992 display of the Quilt another expression of conflict and anger 



64 "One of the letters we received was also sent to the White House: 'Dear Mr. President, I am 
writing to you today to express my outrage, my disbelief, my anger, my sadness because of the 
complete silence form you concerning the beautiful NAMES Project Quilt . . . The Quilt has 
come to Washington, D.C, for three years in a row. For those three years, there has been silence 
from the White House. I keep asking, Why? Why?'" Ibid., 89. 

Cleve Jones describes the scene when President Bush senior refused to visit the Quilt in 1989, 
but flew over it in a helicopter. "As the metallic throbbing quickened and grew louder, so did the 
reading [of the names]. Then the helicopter burst into view and flew directly overhead. As of on 
cue, the shouting increased. People began to literally scream the names of their dead. First one, 
then thousands of fingers pointed upward. Shame, shame, shame, the chanting began." Ibid., 187 



66 



occurred: a so-called political funeral. 66 The ashes and urns of people having died of AIDS 
where thrown onto the lawn of the White House. 67 In the following I want to briefly discuss 
these expressions of conflict in communal grief. 



£.2.2: The history and structure of the political funerals 

Political funerals were first discussed as a political demonstration against the Reagan 
administration in 1988 and against the Japanese embassy in the US over a conflict around AIDS 
pharmacies. The first political funeral for HIV/AIDS was then conducted in 1992 after the death 
of AIDS activist David Wojnarowicz in New York City. 
ACT UP New York lists 68 the following 8 political funerals between 1992 and 1998: 69 

1 . David Wojnarowicz: Wednesday, July 29, 1992, Memorial Procession, 12th Street & 2nd 
Avenue. NYC 



Thanks to Rev. Jim Mitulsky, long time AIDS activist for alerting me to the existence of this 
particular expression of communal grief. 

' "Three hundred activists protested outside the White House, tossing funeral urns with ashes - 
including my friend Joey Van Es's - over the wrought-iron fence. Police on horseback charged 
in, but no arrests were made." Jones and Dawson, 236. 

/TO 

This is not necessarily an exhaustive list of all political funerals that took place in that period. 
For the purpose of this paper they offer enough evidence. I will also, for reasons of space, not 
discuss the specific content of the texts written for or about the individual funerals. For a small 
collection of texts about the AIDS Related funerals see the Appendix Political Funerals. I have 
decided to include them as an Appendix because I found that the political funerals are a rather 
very enlightening and important, yet unknown, expression of communal grief, and the source 
material is not easily accessible. 

Source ACT UP: http://www.actupny.org/diva/polfunsyn.html 



67 



2. Ashes Action : October 1 1, 1992, Washington D.C, White House 

3. Mark Lowe Fisher: November 2, 1992, Funeral Procession 

4. Tim Bailey: July 1, 1993, Political Funeral, Washington, D.C, Stand-off with AIDS Activists' 

5. Jon Greenberg: July 16, 1993, Funeral Procession in the streets of the Lower East Side to 
Tompkins Square Park 

6. Aldyn McKean: March 4, 1994, A funeral procession across 14th Street to Union Square Park 

7. Ashes Action: October 13, 1996 Washington, D.C, White House 

8. Steve Michael: June 4, 1998, Political funeral in front of the White House 

These political funerals are very much connected to ACT UP and exclusively took place in New 
York City and Washington, D.C. There is one occasion of a political funeral (scattering of ashes) 
during the 1994 International AIDS Conference in Yokohama, Japan, when AIDS activist Aldyn 
McKean's ashes were scattered over the Yokohama harbor. The political funeral for Aldyn 
McKean had taken place in New York City earlier in 1994. 

There are two different types of political AIDS funerals: First, the individual funerals 
mainly for AIDS activists, who were carried in their coffins in a funeral procession out of the 
church or the funeral home. During these funeral processions the coffin was either carried into 
the streets and/or brought to places of political importance like the White House. During these 
processions and/or during the following memorial the coffin was on several occasions opened, 
displacing the body of the AIDS victim to the general public. It is my understanding that in both 
New York City and Washington, D.C. this is not legal. The processions were accompanied with 



68 



political signs and slogans. During all those funerals the police tried to prevent them from 
happening or intervened violently. After the political funerals the coffins carrying the human 
remains were returned to the funeral homes to be either buried or cremated. I found no evidence 
that an actual body was placed on the grounds of the White House, as it was the wish of some 
activist. 70 

The second type of the political AIDS funeral were the so called Ashes Actions from 
1992 and 1996, where a larger group of grieving people gathered to throw the ashes of persons 
who had died of AIDS onto the grounds of the White house. Again the police tried to intervene. 
The first of those Ashes Actions happened in conjunction with the display of the AIDS Quilt, but 
independent from it. 



£.2.3: The political funerals as a communal experience 

The political funerals served to carry the personal into the political and the individual to the 
communal. In conducting public political funerals with high media attention the grieving 
community consciously carried their grief into the public. With this they did not only share their 
grief with the wider community. But they also included the wider community into the 
HIV/AID S-affected community. In addition, they were shocking the public by bringing the dead 
into the public field. They were conducting potentially illegal actions with the bodies of the dead. 
With this the political funerals were breaking a deep taboo in the American society around death 



70 

See Appendix Political Funeral, there David Wojnarowicz and Mark Lowe Fisher, 



69 



* m 



and dead bodies. Usually death and the dead are kept away from the living part of the society and 
especially in American funeral culture much emphasis is placed on the attempt to "sanitize" 
death, for example through embalming and restorative measures on the body of the deceased. 
The fact that especially the dead bodies of victims of AIDS were perceived as dangerously 
infective became even more important. During the political funerals some police officers only 
touched the coffins with rubber gloves. With the funeral homes and the cemeteries there are also 
clearly defined rooms where the dead body usually remains. In leaving those prescribed rooms of 
funeral homes and churches the political funerals broke that rule, too. 

By not obeying to the cultural rules regarding the dead body, the political funerals were 
forcing this wider community to confront the fact that the wider community is indeed part of the 
HIV/AIDS-affected community and has to position itself in relationship to HIV/AIDS. The 
public should bear witness not only to the deaths of the individuals but also to the tragedy of the 
AIDS crises and the perceived indifference of the political system. 

The original intention of the AIDS-related political funerals was to express the rage and anger of 
individual and communal grief towards a perceived indifferent political system. They were used 
to create an audience where the voice of the HIV/AIDS-affected community could be heard. 
During the political funeral, this communal voice was a voice of anger and rage, ready to enter 
into conflict. They were intended as expressions of conflict over many AIDS-related issues. The 
more provocative they were and the more taboo was broken, the more media attention they got, 
and the better they served the political agenda of the community that conducted those funerals. In 
that respect the political funerals, although only few, have been extremely successful. 



70 



In giving a voice to the HIV/AIDS-affected community the political funerals were adding 
meaning to the individual loss and the grief. This might not have been the original intention. But 
it was mainly AIDS activists who, after having dedicated parts of their life to the fight against 
AIDS, now dedicated their death and their funeral to this fight, too. In doing so they, for a last 
time, raised their voice for and in the HIV/AIDS-affected community. 

The political funerals, like the AIDS Quilt, are also not only a function of the HIV/AIDS- 
affected community but also helped by creating and empowering the HIV/ AIDS community. 

The political funerals also honored the work and the personality of those passed, 
continuing their work and claiming public acknowledgment. That kind of communal honor and 
acknowledgement was usually denied to AIDS activists and AIDS victims. State funerals are 
usually given to people who have done important service to their community. The political 
funerals for AIDS Activists serve a similar function for the community involved. In bringing the 
body or the ashes to the White House or other important public places, they claimed and received 
a public recognition and lying in state, even if this was forced onto an unwilling public. 

Public funerals can also be understood as communal funerals for all those who have not 
received a funeral that was appropriate for the community. And they offered the possibility to 
attend an appropriate funeral for those who were denied attendance at the funeral of their loved 
one, as it frequently happens in the HIV/AIDS-affected community. At a public funeral the 
participants and the HIV/AIDS-affected community are then enabled to bring the grief of many 
other funerals they had experienced or could not attend. 



71 



Political funerals are, as the AIDS Quilt, true communal expressions of grief. They could 
not have happened individually and are a communal expression of the anger and conflict that is 
part of the grief related to HIV/AIDS. They happened in, through, and for the community. 



£.2.4: Critique of the political funerals 

The critique of the funerals is rooted in their very nature. They were criticized for using the 
bodies of AIDS victims and the grief of the participants for political gain. They were also 
criticized for their political content. Not everybody in the HIV/AIDS-affected community 
supported the political agenda of those who organized the political funerals. 

One main concern was that they crossed the borders of what was perceived as good taste 
and cultural appropriateness. All of those criticisms touched integral parts of the political 
funerals, which where for the most part intentional. The organizers wanted to express their grief 
radically, so that their voice would be heard. 



E.3: The AIDS Ribbon 

E.3.1: In the village of grief 

In the imaginary place of the village of grief, the community exists through the presence of the 
grieving individual in the village itself. In the real world the members of the grieving community 
usually know each other, for example in families. Or the grieving community constitutes itself ad 



72 



hoc, for example during a funeral or memorial service. Larger communities need an easily 
understood symbol that helps to identify the individual as part of that particular community. 



E.3.2: The history and structure of the Red Ribbon. 

The Red ribbon, the best know, visual sign in relation to HIV/AIDS was established 1991 by the 

71 

New York based Visual AIDS Artist caucus. It was intended to promote public awareness for 
people living with HIV/AIDS and soon became the symbol for HIV/ AIDS worldwide. The artists 
that form the Visual AIDS Artist Caucus remain anonymous as individuals. This gave room to 
the growth of urban legends regarding the origin of the Red Ribbon. The most famous seems to 
be the legend that it was invented by actor Elisabeth Taylor after the death of her personal friend 
Rock Hudson through AIDS. I could not find any historical evidence for the historic truth of this 
urban legend, but this legend most certainly helped to achieve the goal of the founders of the Red 
Ribbon project. Through the death of this well known actor and the involvement of Elisabeth 
Taylor the public awareness for HIV/AIDS grew tremendously. Since the early 1990 the Red 
Ribbon was worn first by artists and then by many individuals. The idea of the ribbon itself is not 
original. Yellow ribbons or pieces of cloth seem to date back to the 19 th century were they were 
symbols of women and families waiting for the return of members of the armed forces. 



71 

see: http://www.thebody.com/visualaids/index.html 



73 



E.3.3: The Red Ribbon as a communal experience 

The simple structure, a piece of red material connected and worn on pin, and the roots of the 
ribbon in mainly American culture, made the Red Ribbon the best known symbol in relationship 
to HIV/AIDS. As a symbol the Red ribbon has many meanings. It was originally intended to 
show a visual support and compassion to those living with HIV/AIDS and their caregivers. In 
this it is a symbol of solidarity. It also can serve as a symbol for HIV/AIDS -related grief. To 
limit the meaning of this symbol to either one or the other would diminish the possibilities of this 
symbol. The real importance of the Red Ribbon lies not only in what it signifies, but in the fact 
that it helped to create the HIV affected community. The Red Ribbon served and serves as a 
communal code for the HIV/AIDS-affected community. 



£.5: Conclusion 

HIV/AIDS-related grief is a very challenging and complex construct of many different levels and 
experiences. The HIV/AIDS-related community has partly been very successful and partly less 
successful in accepting that challenge. As in individual grief, this grieving will never totally be 
completed, but it needs to be addressed. There are many different ways of adequately addressing 
this grief. But as long as the HIV/AIDS crises is ongoing, the HIV/AIDS-affected community 
needs to constantly re-think and re-invent those expressions of communal grief. 

It is important to note, that the described reactions to grief, both the mainly creative and 
the mainly conflict-centered are loss-oriented. Some of them had their specific time and space, 



74 



like the political funerals. Others have become so widely accepted, that they have lost a lot of 
their impact, like the red ribbon. This also shows that the different expressions of grief need to 
constantly re-visited to find the adequate expression for the current culture and situation. 

The above discussed reactions of grief were more or less consciously created by 
individuals or groups and accepted and used by the larger HIV/AIDS -affected community as 
relevant and authentic responses. In some way, one can argue that they were designed and then 
utilized in such a way that they became a communal expression. It is a historic approach to 
identify them as communal expressions of grief. 72 Some of these ritualized and established 
expressions still continue today. The closer one gets to the present the more difficult it becomes 
to identify newly-designed expressions and estimate their communal acceptance and relevance. It 
will be the task of a future research to identify the rituals and expressions of the early 21 st 
century. 

Beside the designed expressions there is at least one genuine, undersigned communal 
expression of grief. While the late 20 th century saw a desire and communal agreement to take 
action in relationship to HIV/AIDS, this desire and communal agreement seems to change. This 
change in the reception of the reality of the HIV/AIDS crises in a wide part of the rich, western 
society, which can be understood as an expression of the desire to move on, seems to be the 
reaction to the ongoing HIV/ AIDS crises. In the next step I want to address this development. 



It would require more research to find similarly designed expressions that were not accepted as 
communal expressions. The fact that the AIDS Quilt obviously was not accepted in the same 
way in Germany as it was and is in the US could be an example. The rather small scale 
acceptance of the Gedenksteine in Germany could be another example. To analyze this would 
require research that is beyond the scope of this thesis. 



75 



76 



F: The situation in the 21 st century 

F.l: The change of my basic assumption 

As I have shown earlier, I understand grief as the natural response of individuals as well as 
communities to the experience of loss. In relationship to HIV/AIDS, this experience of loss is 
very multidimensional and difficult to define exactly. I have also shown how I understand the 
different places in grief that the HIV/AIDS -affected community can go with this experience of 
loss. These places in the "Village of Grief represent different emotional needs and strategies to 
address those needs. I have also shown my understanding of the HIV/AIDS-affected community. 

It was now my hope and goal for this thesis to be able to locate the HIV/AIDS-affected 
community at different places in the village of grief. I found that I was able to do so with the 
historical situations I described earlier. The clearer I was able to describe a certain reaction, the 
better I could relate it to a certain place in the village of grief. The closer I got to the present, 
especially for about the last 10 years, the less clear the situation became. Part of this unclearness 
has a historical diminution. It is historically easy to describe and evaluate a well-documented 
historical occurrence that has a clear beginning and a clear end. Such a historical occurrence can 
be evaluated from the outside. The closer one gets to the present, the more difficult this process 
becomes. The observing person becomes part of the historical situation and needs to evaluate it 
form the inside, which becomes necessarily more difficult. 

I wanted to attempt to identify different grief reactions. Originally my suspicion was that 
through a better definition of the place where the HIV/AIDS-affected community would be 



77 



located in the village of grief one could obtain a better understanding of the needs of the 
community. This could then help to define a system of responses by the community itself in 
general and the church in the community in particular. 

To locate this present place or places in the village of grief I had intended to conduct a 
series of interviews in the HIV/AIDS -affected community. These interviews were intended not 
as statistically relevant interviews but as a collection of individual opinions of a non- 
representative group of individuals who self-identify or are identified as members of the 
HIV/AIDS-affected community. To conduct statistically relevant interviews in the relevant 
community would be beyond the scope of this paper. 

In preparation for those formal interviews I have talked informally with a number of 
persons which I identified as members of the HIV/AIDS-affected community. In these 
conversations I explained to them briefly the scope of this thesis and my general understanding 
of grief. I then asked them about their own individual experience of HIV/AIDS -related grief and 
their general assessment of the situation of the HIV/AIDS-affected community. These were not 
yet the actual questions I wanted to ask, but with those conversations I wanted to determine the 
kind of questions I had to prepare. 

To my surprise I found that my basic assumption was incorrect. I had assumed that there 
was an definable experience of individual and communal grief, which could be identified and 
located within the system of the village of grief. 

In the conversations I had I found that my conversation partners clearly agreed that they 
would belong to the HIV/AIDS-affected community. Even those who would place themselves on 



78 



the margins of this community agreed that under my definitions they belonged to the HIV/AIDS- 
affected community. Most were able to place themselves in the HIV/AIDS -affected community 
intuitively, often around the issues of safer sex behavior, risk management, or the agreement that 
they could be in contact to HIV/AIDS-affected persons. 

There was a clear disagreement in most conversations, though, that my conversation 
partners experienced any kind of communal grief. Some did not have a experience of grief at all, 
some had individual experiences which they had dealt with to their own satisfaction or saw it as 
purely individual experience with no connection to the HIV/AIDS community. The only 
agreement that a communal HIV/AIDS-related grief experience exists came from those who 
worked voluntarily or professionally in some parts of the HIV/AIDS-affected community. They 
could identify a parallel between, for example, prevention work with individuals and communal 
prevention work with individual and communal grief. 

Most of my conversation partners did not see the necessity to place themselves in the 
village of grief or were not able to do so. To accommodate this finding, I had to incorporate an 
additional section on my model of the village of grief. It was not an additional place. It is rather 
the observation that there were people in the village who were not, or did not want to be, aware 
of their presence in the village. This section allowed me to include those who were only 
identified as members of the HIV/AIDS-affected community from the outside, but did not want, 
for whatever reason, see themselves as affected by HIV/AIDS-related grief. It also allowed me to 
understand the reactions and behaviors of those who agreed to be part of the HIV/AIDS-affected 



79 



community and as such were placed in my understanding in the village of grief, but did not agree 
themselves that they were there or needed to be there. 

In a second step I then realized that this unawareness or unwillingness to be aware does 
not make it more difficult to identify the communal situation, but it is the communal situation 
which I had looked for. Instead of being able to identify the place where the HIV/ AIDS -affected 
community, or different parts of it were inside the village of grief I have to formulate a new 
hypothesis to describe the current situation. 

My preliminary assumption of these findings was that the reaction of the HIV/AIDS- 
affected community in the rich western culture in the beginning of the 21 st century was a clear 
case of denial. I assumed that people denied, on a conscious or non-conscious level the fact that 
they were affected by HIV/AIDS. In my conversations, I realized that my conversation partners 
did not deny the existence of HIV/AIDS-related communal grief. They agreed that there was 
HIV/AIDS-related grief, but it did not apply to them individually or they clearly avoided the 
grief altogether. 

The communal approach to HIV/AIDS-related grief which I identified in that part of the 
Western culture I had access to I therefore call "individualization and avoidance." In the 
following I want to discuss those two terms in detail. 



I use this term here according to the model of Kubler Ross. In denial, the person does not want 
to accept the fact that loss and grief is happening to them. 



80 



F.2: A hypothesis of how the situation is today. 

The following is now my personal interpretation of these non-representative findings. I am very 
conscious of the fact that this interpretation does not have a necessary statistically-representative 
scientific foundation. It is purely based on my observations. But I believe that my interpretations 
offer a substantial hypothesis that explains many single findings for the situation in the first years 
of the 21 st century. 



F.2.1 Individualization 

The first aspect of the situation in the 21 st century is individualization. This means that 
individuals relate the HIV/AIDS situation immediately to their personal experience and cannot or 
do not want to see a communal aspect. This is not egoism which I understand as a ethical 
category that focuses exclusively on the self and finds its expression in egoistical actions. 
Individualization I understand as a certain narrow viewpoint that finds its expression in an 
individualized perception. As such, it is not an ethical category, although there could develop 
morally-relevant consequences from it. 

Especially around HIV/AIDS -related grief, I have in my conversations repeatedly heard 
two different kinds of arguments of individualization. One comes from a position of past or 
present grief experiences which is solved sufficiently for the individual. One could summarize 
this argument as follows: "I have had my experiences of grief which I have worked through. 
Grief is a personal experience, and I personally am at a certain point in the village of grief with 



81 



my grief. But that has nothing to do with a community." This argument reflects also a overall 
tendency at least in German culture to understand grief as something very private and purely 
personal. This argument acknowledges the fact of HIV/AIDS-related grief, but approaches it 
individualized. 

A second kind of argument I heard especially in the younger generation that became part 
of the HIV/AIDS-affected community after about the year 2000. This generation does not have 
the personal first-hand experience of the early years of HIV/AIDS and seems not to be interested 
in it as a historical experience. This argument can be summarized as follows: "I do not 
personally know anybody who is HIV positive, has developed AIDS, or has died from AIDS. 
Therefore I have no personal experience of loss and therefore no reason to grieve" Their 
individual experience does not give any reason for grief. Nor do these individuals, in some cases, 
even experience themselves as affected by HIV/AIDS. 

The experiences of the different kinds of losses that I have discussed earlier also often 
seem to be too abstract for some people to have a personal experience of them. Therefore they 
lose relevance. Here the argument would be: I have not lost history, because I do not have a 
connection to that history in the first place. The experience of loss of sexual freedom is an 
exception but my conversation partner mostly would identify this more as a feeling of regret than 
of grief. One conversation partner, said: "What I grieve, or regret, is the fact that HIV stops me 



82 



from doing certain things and living my sexual life in the way I would like to do. In this I am an 
egoist." 74 

The practice of safer sex for some is so clearly incorporated into the individual sexual 
practice that it is not really reflected on. Or the practice of safer sex is something that seems to be 
not that important anymore, for various reasons. 

This also includes, and reflects on, a shift in the experience of AIDS I perceive in the 
rich, Western society with access to all possibilities of Western medical care. The perception of 
HIV/AIDS has shifted from an unmanageable fatal disease, which is a communal problem, to a 
manageable chronic illness, which then, in turn, becomes an individualized problem. 



F.2.2: Avoidance 

The other aspect of my hypothesis is an observation I made within and outside of those 
interviews. HIV/AIDS, although present as a reason to practice safer sex, has no real connection 
to the lives of many of those I had identified as part of the HIV/AIDS-affected community. 
In other words: my outside placement of individuals inside the community and the self 
placement of those individuals was not congruent. They usually placed themselves on a much 
less-affected position than I had thought. I was able to identify two different situations. 



J "Was ich betrauere, oder schade finde, ist die Tatsache, dass HIV mich daran hindert, manche 
Sachen zu machen und mein Sexleben so auszuleben, wie ich es gerne tate. da bin ich irgendwie 
Egoist. " (white, gay German man, 30, single) 



83 



I observed a clear distinction between a minority of people who would self-identify as 
activists and a majority of the HIV/AIDS-affected community. As activists, I understand people 
who are, as volunteers or professionally, in close contact with HIV/ AIDS. With this group of 
people my placement and their self-placement seemed rather congruent. This group is very aware 
of the impacts HIV/ AIDS has on the HIV/AIDS-affected community on many different levels. 
This group also agrees that there are necessary reasons to grieve and that the HIV/AIDS-affected 
community needs support in this grief. 

This was different from the majority, who would agree that they were affected by 
HIV/AIDS. But with this majority of people my placement was much closer to the center or 
much more affected than their own placement would be. Not knowing anybody living with HIV 
or AIDS or having died of an AIDS-related illness seemed to be sufficient for them to place 
themselves as only marginally affected. I did not find, as I had expected, a larger group of people 
who would not be activists, but still would experience themselves as being very affected. For 
them HIV/ AIDS and HIV/ AIDS-related grief are present as a marginal experience, for them, 
though it may be a problem for others. One of my conversation partners said: "The awareness for 
HIV and AIDS has diminished dramatically in Germany. After initial fears that a massive 
epidemic would hit Germany, HIV/AIDS now is understood again as 'the illness of the others.' 
That must make one sad. When HIV/AIDS becomes a stigma that is accepted in society, then 
this is a clear signal for end of solidarity and a growing egoism in our community." 75 



7S 

"In Deutschland ist die Aufmerksamkeit fur HIV und Aids stark zuriickgegangen. Nach 
anfanglichen Befurchtungen, eine massive Epidemie wiirde auch Deutschland heimsuchen, wird 



84 



The underlying mechanism of not wanting to be affected or see the HIV/ AIDS as a 
problem of others I identify as avoidance. During the beginning of the AIDS crisis up to about 
the year 2000 HIV/AIDS was so present it was practically unavoidable. HIV/ AIDS was clearly 
visible and the reasons for grief were numerous and many experienced them on a daily level. To 
avoid being affected by HIV/AIDS was difficult if not impossible for a large part of the 
HIV/AIDS-affected community. It is a natural human tendency though, to avoid experiences that 
are hurtful or even unpleasant. Therefore the moment it became possible to do so, the 
HIV/AIDS-affected community started to avoid these experiences. 

This natural tendency to avoid hurtful and unpleasant experiences is supported by many 
different multidimensional factors. There is not a single governing factor that could be attributed 
as the major reason for the growing avoidance. The factors for avoidance are also most often the 
reason for both avoidance and expression of avoidance. In some ways they support their own 
growth. Only in their culmination they form the situation that enables the HIV/AIDS-affected 
community to avoid being affected by HIV/AIDS and HIV/AIDS-related grief. 

One of the most important factors for the growing possibility of avoidance is the rapidly 
diminishing visibility of HIV/AIDS in the rich western culture. AIDS is still present and visible 
if one wants to see it, but it became increasingly easy to avoid seeing. 



HIV/Aids nun wieder als 'die Krankheit der anderen' aufgefasst. Das muss einen traurig 
stimmen! Wenn HIV/ Aids zum gesellschaftlich akzeptierten Stigma wird, ist das ein deutliches 
Anzeichen einer Entsolidarisierung und eines um sich greifenden Egoismus in unserem 
Gemeinwesen. " (white gay man, 35, single) 



85 



In the 1980s and 1990s one could see the evidence of HIV/AIDS in different places in the 
HIV/AIDS-affected community. Infected and sick persons were very often clearly visible 
In rich western societies this is very often not true anymore. The development of the medical 
treatment gave not only a much better and greater life quality to the infected, but also made 
HIV/AIDS less visible. This happened especially with the development of combination therapy 
around the year 2000. This is of course something I am eternally grateful for, and it is definitely 
only true for the rich western society I am a part of. 

In the 1 980s and 1 990s HIV/ AIDS often had the face to the person sitting next to you in a 
cafe. Already that fact of visibility made HIV/AIDS a communal experience. 
Since the development of better medical treatment, an individual in most cases needs to be told 
about somebody's sero-status to be aware of it. That of course makes avoidance much easier. If 
one does not look closely or ask, one can avoid the knowledge about a HIV Infection and 
consequently any experiences of grief. 

With significantly fewer deaths to HIV/AIDS in the western world and a growing number 
of deaths in the developing world, the images of HIV/ AIDS have changed. This applies to direct 
images but even more importantly through the images transported in the media. In the 1980s the 
image of someone dying of AIDS was that of someone a majority of the HIV/AIDS-affected 
community in the western world could identify on one level or the other. Today the image of 
HIV/AIDS very often comes from far remote parts of the developing world, from different social 
and cultural circumstances. Those images are much more difficult to connect with, and in turn 
easier to avoid. 



86 



At the same time as it becomes easier to avoid disturbing, unpleasant, and affecting images, the 
HIV/AIDS-affected community is exposed to a large amount of positive images in connection to 
HIV. 76 

One example of that change of HIV/AIDS-related images are advertisements in the media 
for HIV/AIDS pharmacy products: obviously well off good-looking persons in pleasant clothing 
and surroundings advertising the fact that life with HIV is, under good conditions, manageable. 
Even official AIDS prevention campaigns use the same kind of images. Good looking models 
advertise for the use of condoms and for a tolerance towards people living with HIV/ AIDS. And 
although I do not want to judge the content and the message of those whole campaigns, 
HIV/AIDS is connected with positive images that make it easy to avoid the whole reality of the 
disease, especially HIV/AIDS-related grief. 

Another similar indicator and expression of avoidance is the development of so-called 
gay male "bare back" porno movies. This is a growing market of images showing very good 
looking young and healthy men engaging in unprotected anal and oral sex. And although most of 
these images contain a safer sex message at one point or another, they convey a certain image. 
These movies and images are, on the side of the consumer, a pure experience of fantasy, but they 
contain a certain connection of images: not safe sex connected with young healthy looking 
bodies. This again makes it rather easy to avoid having to think about the consequences of 
unprotected sexual encounters. 



1ft 

The following are only two examples to highlight my argument. The scope of this thesis does 
not allow an in-depth analysis of the change of HIV/AIDS images, although that would be an 
interesting research. 



87 



Another situation that supports a tendency towards both individualization and avoidance 
is the demographic change of the HIV/AIDS epidemic. In the earlier days the focus in the rich, 
western part of the global HIV/AIDS-affected community was on its own segment of this 
community. In the beginning of the HIV/AIDS epidemic little was known about the devastating 
effects of HIV/AIDS for example in Africa. And the effects in the western segment of the 
community were so overwhelming, that there was little opportunity to focus on the developing 
world. And although today the reality of HIV/ AIDS is still present in the western world, the 
focus has clearly shifted. 

The individual effects of HIV/ AIDS in the western world have changed and on some 
levels lessened through the development of available pharmacy products in the rich western 
world. At the same time the individual effects of HIV/AIDS in the non-western part of the world 
have not changed for the better or have even declined. In comparison to the early years of the 
epidemic the number of deaths has dropped in the western world. This caused a shift in focus 
towards the developing world. The last years have seen the dramatic communal effects of 
HIV/AIDS in those societies. In Africa, whole economies are in danger of collapsing; whole 
cultures need to change in order to accommodate the losses. New problematic fields that were 
unknown to the early experience in the western world developed. The highly problematic 
situation of AIDS orphans in many African countries is just one example. In the early western 
HIV/AIDS experience, the problem of AIDS orphans was existent but comparatively small. 
Today the situation of AIDS orphans is among the most pressing problems for many affected 
countries. 



88 



With all that, the focus has shifted in the western world from a situation where the 
western HIV/AIDS-affected individual could easily self-identify with the HIV/AIDS-affected 
community to a rather remote global problem. Although it is visible for the western world, it 
seems to rather difficult to identify with the problems of an AIDS orphanage in Zimbabwe. 

This situation makes it rather simple to individualize and avoid the problem, and 
therefore not identify it as an individual or communal problem. In avoiding addressing and 
recognizing the reason for grief, the HIV/AIDS-affected community also avoided the grieving. 77 



F.3: Conclusion 

In some ways, individualization and avoidance are the opposite movement that became visible 
for example in the AIDS Quilt. In the AIDS Quilt, individual grief experiences created a 
situation and atmosphere that allowed others to express and experience their grief, which then 
leads to a communal grief experience that is greater and independent of the sum of all the 
individual grief. In some ways, the Quilt created the situation in which the Quilt's existence and 
a heightened awareness of grief and the positive effects of grief became possible. 

Avoidance functions with this same mechanism, but in different directions. Today, 
individual experiences of avoidance create a situation and atmosphere that allow others to 
express and experience individualization and avoidance, which then leads to a communal 



77 

The avoidance of grief in relation to HIV/ AIDS is in my opinion just a special case of a larger 
tendency in western culture. The western culture tries desperately to avoid illness, the process of 
dying, death and grief. A more general discussion of this tendency is beyond the scope of this 
thesis. 



89 



experience of individual individualization and avoidance. Therefore individualization and 
avoidance create and build the situation in which it becomes not only possible, but easy, to 
individualize and avoid and thus come to a lessened awareness of being affected by HIV/AIDS. 
This of course in turn accelerates this movement. 

At this point, it is important to say that individualization and avoidance are not ethical 
categories, nor do they imply a moral judgment. They only serve to describe the situation of the 
HIV/AIDS-affected community in the rich western world in order to develop an adequate 
response by the HIV/AIDS-affected community in general and the Churches in particular. 
Individualization and avoidance require a completely different response than other places in the 
village of grief would do. 



90 



G: Ecclesiological consequences, the understanding of the nature of the church and the 
reactions of the church. 

The AIDS crisis, as other individual or communal crises, is often understood as a challenge for 
the church to do something. The crisis then is seen as something separate from the nature of the 
church, and the church reacts to this crisis. In the following I want to discuss the role of the 
church in relationship to HIV/AIDS-related grief. This affects the church in general but also the 

no 

different groups that form the church. 



G.l: The church and grief 

The invisible church, ecclesia invisibilis, is the theological understanding of all human beings, 
past, present, and future, who are known by God to be part of the eternal community of saints. 
Before God, the church is already ecclesia triumphans, the church that has overcome all 
struggles and fighting and also all grief. The ecclesia triumphans is the expression of our hope 
for a time and place where our grief is no more. 

Ecclesia militans means the sum of all living Christians in all Christian organizations in 
the visible church, ecclesia visibilis, who fight and struggle here on earth. The ecclesia visibiblis 
finds its form in larger bodies as denominations, in the form of congregations that gather at a 
certain place and time and in the individual Christian. It is the ecclesia visiblilis as the struggling 



78 

To avoid the confusion of terms I will use the traditional ecclesiological terms to signify the 
different aspects of the church. I will use the term church to identify the different aspects of the 
ecclesia as denominations, congregations, communities, church leaders and so on. 



91 



and fighting body of Christ, as ecclesia militans, that has to deal with the grief related to 
HIV/AIDS. As ecclesia militans, the ecclesia visibilis is part of the HIV/AIDS-affected 
community and therefore has to deal with her grief. 

The following can only serve as a broad overview of the ecclesiological situation that is 
far from comprehensive. For the scope of this thesis I limit myself to single biblical and 
historical examples that show the direction of my argument. I am clear that I do not show the 
complete historic development, nor offer a historical critical exegesis. The purpose of this 
chapter is to show the broad biblical and traditional thoughts about the role of the ecclesia 
visibilis as guide and helper in the Village of Grief. I want to develop this role from the 
understanding of the role of the priesthood in the situation of grief and mourning. Priesthood in 
this context means the professional and ordained expression of the ecclesia. In turn that means 
that the functions of the priest are ultimately functions of the ecclesia herself. 



G.l.l: Biblical traditions around grief 

G.l.1.1: The Hebrew Scriptures 

The traditions about grief in the Hebrew Scriptures can be approached through the functions of 
the priesthood. The main functions of the Jewish priesthood, as the priesthood of Aaron and the 
service of the Levites, were in the ritual and the sacrificial duties, especially since the 
centralization of the cultus in the Temple in Jerusalem. The most important task of the priesthood 
was to perform the twice daily Tamid. Those sacrifices of a pure one year old sheep in the 



92 



7Q 

morning and in the evening ensured the continuing reconciliation of the people with God. A 
similarly important function was the ritual on Yom Kippur. This sacrifice also served for the 
purification and reconciliation of the people. 

There were also a number of sacrifices in the daily life of an ordinary person, when 
sacrifices and certain rituals became necessary: The presentation of a firstborn in the temple, the 
sacrifices of thanksgiving, reconciliation, and many other occasions. All those moments in life 
required the sacrifice through a priest. The death of a person itself, a funeral or the experience of 
grief and mourning did not require a special sacrifice. The sacrifices and rituals regarding those 
situations were connected to purification. 

Another important function of the priesthood was to declare somebody unclean, for 
example in the event of sickness or other situations that resulted in cultic uncleanness, and also 
declare somebody clean after a period of cultic impurity. 80 

In regard to the grief and mourning, the cleansing and declaration of cultic purity became 
especially important. Everybody and everything who came in contact with a dead person or 
somebody who had touched a dead person became unclean 81 for a certain period of time. To be 
cleaned in this situation required a cleansing with a specially-prepared water. The production of 
this water required among others the participation of a priest. 82 And although there is no explicit 
mentioning of grief and mourning, it is clear that everybody who lived in the household of a 



79 Exodus 29:38ff. 

80 Leviticus 12 to 21 

81 Leviticus 22,4 

82 

Numers 19, the sacrifice of the red cow. 



93 



deceased person, along with many household goods, required this ritual and therefore the 
participation of a priest. This ritual recreated cultic cleanness and with that the ability to 
participate in life again. The Mosaic Law does not mention a special priestly function in the 
funeral service, or in the care for the bereaved, as we understand it today. The priestly function 
was to create cultic purity through the performance of sacrifices and certain rituals. This was not 
limited to the situation of death, but a necessary function for the bereaved. 

The functions of the priests, therefore, were very well defined, and in the situation of 
grief and mourning limited. If we look for functions the modern bereaved might expect, like the 
offer of comfort or the explanation of a transcendent reality, we would have to look elsewhere. 
Those are not priestly, but prophetic, functions. It is again and again the task of the prophets and 
poets to offer comfort, 84 and declare that God alone is the source of comfort. 85 

Both the priestly and the prophetic function are functions and responsibilities of the 
whole ecclesia militans as guides and helpers in the village of grief both for individuals and for 
the HIV/AIDS-affected community. 



Q-5 

One of the very few mentions of funerals at all is the law regarding the funeral of somebody 
who was hung. (Deuteronomy 21 :20-22) The reason given is the ritual purity of the land. This 
law became especially important for the burial of Jesus. One can assume that it would have been 
the task of the priesthood to take care that this law was followed. But again, this has little to 
nothing to do with the role of the priest in the situation of grief and mourning as we understand it 
today. 

Isaiah 40: 1 might serve as the most famous example. 
85 Psalm 23 might serve here as the most famous example. 



94 



G.l.1.2: The New Testament. 

For the early Christian Church, Jesus was the example of empathy, comfort, and participation in 
the grief of others. They formed their understanding of the role of the fellow Christians 
according to this example 

To guide and comfort in grieving was seen as a function of the Holy Spirit given to the 
community of saints. To be guides in the Village of Grief, therefore, became a function of the 
whole community of saints and every single member of that community. 

The special situation of the early Christian community, which expected the return of 
Jesus soon, also did not make it necessary to contemplate the situation of grief in great detail. 
The Pauline and Pastoral letters are aware of the situation of grief. The certainty that Jesus would 
return soon, and that Christians would be reunited with those few who went before, was a great 
and natural source of comfort and joy. This also did not create the necessity for a certain role of a 
Christian priesthood, which did not exist in that period. 

The New Testament does understand guiding and support in times of grief as a 
responsibility and function of the whole community according to the example of Jesus Christ. 
The traditions in the different denominations also see an important role of the ecclesia as guides 
in the Village of grief. Those roles are often, depending on the tradition, fulfilled by a specially 
prepared or ordained person, but are always ultimately functions of the ecclesia militans. In the 
following I want to show two different approaches to the understanding of this role, which again 
only can serve as a short overview of the ecclesiological understanding of this role. 



95 



G.1.2: Church-historical traditions around grief 

G.l.2.1: The Roman Catholic tradition 

The Roman Catholic Tradition understands its priesthood in the tradition of the priesthood of 
Aaron and the service of the Levites. 86 There are therefore no strictly sacramental duties for the 
Priest and the ecclesia in the situation of bereavement, except to conduct the Eucharistic 
Sacrifice in connection with the funeral celebration or at a later date. With this Eucharist as part 
of the funeral, the community of the living and those who have passed away is expressed and 
celebrated. 87 

Especially important for the Roman understanding of the role of the ecclesia militans in 
the situation of bereavement was the development of the idea of purgatory. Here again the 
thought of a continuing community of the living and the dead is expressed. There is a community 
of solidarity among all faithful, living and dead. 88 The living can offer prayers and especially the 
Eucharistic sacrifice to help those who are in Purgatory in a community of solidarity. Through 
this community with the ecclesia penitens, meaning those who have passed away but not yet 
have entered the ecclesisa triumphans, the ecclesia militans becomes part of the HIV/AIDS- 
affected community, too. 

Historically, it was important and a source of comfort for the relatives to know that the 
ecclesia militans could do something good for the deceased loved one. The ecclesia therefore has 



Catechism of the Roman Church, 1540 

87 Catechism of the Roman Church, 1689 

88 Catechism of the Roman Church, 1475 



96 



an important and integral role in the process of grief and mourning. This role is not in counseling 
or support of the relatives, but is an act for the deceased directly. The knowledge that something 
good was done for the deceased then is the source of comfort. 



G.l.2.2: The Protestant tradition 

The reformation understands the function of the ecclesia militans as teaching justification as an 
act of mercy through Christ through faith. 89 This is done through the preaching of the word and 
the administration of the sacrament. 90 And although this should normally not be done by 
somebody without due ordination, 91 this is seen as the function of the whole of the ecclesia 
militans. The ecclesia happens where the Gospel is correctly preached and the sacraments are 
administered according to the Gospel. 92 

For the situation of grief and mourning that means now that the protestant emphasis on 
preaching the gospel is also applied here. It is seen as important to hear the comfort and 
reassurance of resurrection and life everlasting through the preaching of the gospel. The funeral 
is the place to preach about Christian hope, justification, resurrection, and life everlasting. This is 
normally done by an ordained person, but ultimately is a function of the whole ecclesia militans. 



Unser Glaube: gratis iustificentur propter Christum per fidem Augsburger Bekenntnis, Art. 4 
De justificatione. 

Unser Glaube: Augsburger Bekenntnis, Art. 5 De minsiterio ecclesiastico . 

Unser Glaube: nisi rite vocatus Augsburger Bekenntnis, Art. 14 De or dine ecclesiastico. 

Unser Glaube: congregatio sanctorum, in qua evangelium pure docetur et recte administrantur 
sacramenta. Augsburger Bekenntnis, Art. 7 De ecclesia. 



97 



Different from the Roman tradition, there is no tradition of a community of solidarity 
between the living and the dead. With death, the deceased is in the hands of God. Therefore the 
aspect of counseling the bereaved became more important. For this, the tradition of a description 
of the deceased and his/her live in the form of a eulogy developed. It is a form of keeping the 
memory of the deceased alive. 



G.2: The church and crisis 

In order to understand the necessity of a change in the understanding of the nature of the church 
in the HIV/AIDS crisis and HIV/AIDS -related grief we need to understand different possible 
reactions of the ecclesia towards a crisis or problem. The following first three options I 
understand as pastoral. They discuss different ways that the ecclesia reacts. These models are 
adequate and sufficient for the understanding of many critical situations. The nature, depth, and 
extent of the HIV/AIDS crisis and the relevance of HIV/AIDS -related grief, though, calls for a 
more complex model. HIV/AIDS affects the nature of the church. It is an ontological problem. 93 
HIV/AIDS and HIV/AIDS -related grief not only call for a pastoral reaction and model but for a 
different ecclesiology. The third option is therefore ecclesiological and ontological. 



Q7 

It is important to note, that here are other critical situations in the church that would call for 
such an ontological approach instead of a pastoral. This ontological approach should not be 
limited to HIV/AIDS. 



98 



Illustration 4.a: The church opposite to the crisis/problem: 



The Church reacts to 



crisis 




In this model the church and the crisis/problem are separate and different. The nature 94 of the 
church is not affected. The challenge is to find adequate reactions to that special crisis. Other 
functions of the church are not necessarily changed. There is an option for the church not to react 
to the crisis/problem. An example would be a natural disaster like an earthquake in a different 
country. The church sees the crisis and can react for example by collecting money, or choose not 
to react. 

Figure 4.b.The church as part of the crisis/problem: 



The Church reacts to 



crisis 




94 



The scope of this paper does not allow a detailed discussion of the difference between the 
nature of the church itself and the understanding of that nature. In the following I always think 
both. 



99 



In this model, the church and the crisis/problem are also separate and different. The church 
understands herself as part of the crisis/problem. The nature of the church is not affected. The 
challenge is to find adequate reactions to that special crisis/problem. Other functions of the 
church are not necessarily affected. There is the option for the church not to react to the crisis. 
An example for this approach could be seen in a certain understanding of the injustice system of 
colonialism. In many times and situations the church has been part of that unjust situation and 
has reacted negatively and sometimes positively to that problem. 

Figure 4.c: The crisis as part of the church. 
The Church reacts to crisis 




In this model the church and the crisis/problem are also separate and different. The church 
understands the crisis/problem as part of herself. The nature of the church is not affected. The 
challenge is to find adequate reactions to that special crisis/problem. Other functions of the 
church are not necessarily affected. There is the option for the church not to react to the crisis. 



100 



An example for this approach can be seen in a certain understanding of the child abuse crisis. 
This crisis is then understood as a problem within a small segment of the church and the choice 
for reaction was often not to react. 

Figure 4.d: The church and the crisis are ontological combined and inseparable. 



The church and the crisis are ontologically 
combined and all reactions of the church are 
changed. 



In this model the church and the crisis/problem are not separate and different but have affected 
and changed by each other. The crisis has changed the nature of the church. The challenge is 
doubled. The church needs to find adequate reactions to the crisis, which she will do differently 
than in the pastoral models. And she has to examine the consequences of the change brought by 
that particular crisis to all other aspects of church. All other functions of the church necessarily 
need to examined and perhaps adapted. There is no the option for the church not to react to the 
crisis because the crisis has already affected the whole church. I understand this ontological 



101 



model as the only ecclesiological model available to the church to adequately position herself in 
the ongoing AIDS crisis. 



G.3: The ecclesia as both ecclesia hi c tans s and ecclesia servitance. 

The challenge for the church in her form as ecclesia militans is that she is in a double role. She is 
a part of the HIV/AIDS -affected community as well as the guide and helper in the Village of 
Grief who helps individuals and the HIV/AIDS-affected communities in their individual and 
communal grief. 

To understand the role of the church as part of the HIV/AIDS-affected community we 
need to understand the nature of the ecclesia militans as ecclesia luctans. The ecclesia herself is 
a grieving community and needs to grieve in order to have a full life. Individual members of the 
ecclesia militans and the ecclesia militans as community itself are affected by HIV/ AIDS. That 
means that the church has to deal with all the issues I raised earlier. She needs to identify her 
loss, acknowledge her grief, and with this enter the village of grief and approach the different 
places of grief. 

It is an ecclesiological reality that the ecclesia militans is part of the HIV/AIDS-affected 
community. In one way or the other she has to position herself towards HIV/AIDS. This happens 
in at least two different levels. As the community, the ecclesia is the body of Christ in the world 
and is called to acknowledge the risen Christ as Lord and let him govern her live. As such the 



5 The grieving church, from Latin: lugere, to grieve. 
The serving church, from Latin: servire: to serve. 



102 



ecclesia is called out of the World, 97 and needs to stand opposed to the reality of HIV/AIDS and 
needs to speak with a prophetic voice about the reality of God into the reality of HIV/AIDS in 
the world. Especially in situations of crisis, the church needs to practice theology, theo logein, 
talking about God. In this the church has no option. 

The ecclesia is also charged with a responsibility for the whole creation. And the ecclesia 
also knows that the whole World is loved by God that God gave his only Son. The difference of 
the ecclesia to the God-estranged and God-alienated world does not lead to an estrangement and 
alienation to the world itself. The ecclesia is different from the world but part of the world. That 
also means that the ecclesia in all her forms is part of the HIV/AIDS-affected community and 
needs to find the appropriate ways to talk about God in the HIV/AIDS-affected community. 

Historically many denominations and congregations have chosen to enter directly in 
avoidance and individualization. They argued that HIV/AIDS did not exist within their 
respective bodies, because HIV/ AIDS only affected an unmoral community which, by definition, 
did not exist in their ecclesia. Individuals who nevertheless were infected or affected by 
HIV/AIDS proved through that fact that they were not part of the ecclesia invisibilis and 
therefore had no place in the ecclesia visibilis. This is a form of negative predestination theology. 

Especially in the early times of HIV/ AIDS, people who were infected with HIV were 
dealing with AIDS, or even were publicly affected by HIV/AIDS, were asked, or in many cases 
forced, to leave their congregation or their denomination. With this action, those parts of the 
ecclesia visibilis often, depending on the individual theology, also excluded those members and 



97 

"World" here means a constitutive alienation, estrangement, and distance from God. 



103 



the HIV/AIDS-affected community from the ecclesia invisibilis and therefore from all hope 
expressed in the ecclesia triumphans. 

Those churches therefore avoided the subject and singled it out, arguing that their 
community was by definition living a moral live, therefore their ecclesia and their members were 
not affected. The problem of HIV/AIDS was not a problem for them but for other individuals or 
other communities. With this, those churches went into avoidance around HIV/AIDS-related 
grief and opened themselves up for all the problems of unacknowledged grief. 

Simultaneously with being ecclesia luctans, the ecclesia miltans needs to be ecclesia 
servitans. She is called to be with her members in situations of change and provide rites of 
passages in life. This includes official acts such as weddings and funerals, but in a more holistic 
sense includes all emotional individual and communal experiences around those official acts. 
The ecclesia is therefore called to be a guide and helper for grieving individuals and 
communities in the Village of Grief. This is her function in the world. In the following I want to 
show that to be guides in the Village of Grief in relationship to HIV/AIDS is an integral part of 
the biblical and traditional self understanding of Christianity. In other words, the option of 
avoidance or individualization is not available for the ecclesia militans. 



104 



G.4: Consequences for the church as the grieving one in the Village of Grief. 

Through HIV/AIDS and HIV/AIDS-related communal grief the church 98 is called to 
acknowledge the fact that she herself is the grieving one in the Village of Grief. That means that 
before the church can help her own members and the HIV/AIDS -affected community she needs 
to understand her own needs and grief-related situations. The church as community needs to 
walk the whole way from the forest through the village until she can arrive at the place where she 
can see the way leading out of the village. Similar to any individual and community, the Village 
of Grief offers different places with their own challenges and their own benefits. 

The church is not free, though, regarding where to go and when to go, nor to choose to 
walk blindfolded, if she wants to become a guide in the Village of Grief for individuals and the 
HIV/AIDS-affected community. Any church that chooses to do so first has to live in the Village 
of Grief herself and continues to walk as both grieving one and guide. Only after and in self- 
identification as ecclesia luctans, can the church become ecclesia servitans for the HIV/AIDS- 
affected community. 

For the church, this means a potentially difficult path of self-examination and honesty." 
In the forest, she needs to accept and experience that the HIV/AIDS-related grief is indeed her 
own grief, and not the grief of "the others" which she can address from the outside. She then 



The following are only some examples of the different places, reasons, and experiences for the 
church. This list cannot be or even become a complete one. Each church needs to find her own 
path through her own village of grief, and needs to decide how long she needs to stay in the 
village or in particular places. As in individual grief, no one from the outside can force a church 
to do anything in the village of grief. From the outside one can only identify a church at a certain 
place in order to better understand what this church does and why she does it. 



105 



needs to go and consciously see the statue that signifies her losses and what she grieves. This is 
especially difficult in churches where an HIV infection among the lay people, and even more 
among the clergy, is still a taboo. Due to the fact that HIV/AIDS still is mainly a sexually- 
transmitted disease, this would include the recognition that the lay people and the clergy engage 
in sexual acts the church understands as immoral. This would make an open and honest 
discussion about sexuality necessary. Only after this process, could the church move forward in 
her own grief and eventually even help others to see and identify their own statue of grief. The 
church also needs to got to the other places in the Village of Grief. For example the church needs 
to visit the Town Hall to deal with the different legal aspects of HIV/ AIDS in her respective own 
system. In the Shop she could acquire what is necessary in this process. This could be, for 
example, education programs around HIV/AIDS. She needs to visit the Hospital to start the 
healing process for the many wounds the church has experienced and caused during the 
HIV/AIDS crisis. She needs to spend time in the Smith shop to express her angers and 
frustrations. This is especially difficult in many, if not all, church cultures that frown upon and 
do not allow expressions of anger, frustration, or violent reactions. Many churches suppress 
those feelings successfully and therefore are not well equipped if they experience those reactions 
in others. The church also needs to visit the Cemetery, the place where all the losses and lost 
ones are. There she needs to grieve and find her own voice of grief and lament. And she has to 
address and confront her own fears and nightmares that also live in this place. 

And then especially the church, with her faith and the knowledge of the consolation in 
Christ, needs to visit the Pup. This is the place of joyful celebration in the midst of our grief. In 



106 



some ways the Pub, as place of celebration, is the natural place of the church in the Village of 
Grief. The challenge for the church is more not to go there too quickly and make herself at home 
in Pub, excluding those who are not there, yet. 

To do all that, the church has to spend much time in the Church of the Village of Grief, 
spending time in silence and prayer, searching for the connection to the transcendent. This is 
important because her special way through, and her purpose in, the Village of Grief is build on 
this connection and understanding of what the church calls God. In the Church in the Village of 
Grief, and only there, the church has to understand HIV/AIDS as spiritual challenge for 
herself. 100 

Only in accepting the fact that the church is the grieving one, too, she can become a 
wounded healer and fulfill the task before her as a guide and helper in the Village of Grief. As 
for any grieving one, this process is never completely finished but the church is invited and 
called to revisit the Village of Grief whenever she feels the need to do so. 



The church has to fight the temptation to see HIV/AIDS as a purely spiritual problem in the 
Hospital. For example in the Hospital HIV/AIDS is a matter of treatment, of knowledge about 
this treatment and its consequences, and of equal access to that treatment. To understand 
HIV/AIDS too quickly and on the wrong places as only a spiritual problem clouds the perception 
of the other problems of HIV/AIDS. 



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G.5: The Church as scriptural community in HIV/AIDS-related grief. 

The following assessment of the ecclesiological consequences is based on my understanding of 
grief, 101 historical findings, my hypothesis of the situation of HIV/AIDS-related grief at the 
beginning of the 21 st century, and my ecclesiology. 

In the same way as the HIV/AIDS-affected community needs to become a scriptural 
community, the church herself needs to be and become a scriptural community in the HIV crisis 
and especially for the grief related to HIV/AIDS. After having moved through her own 
experience in the Village of Grief, the church can help individuals in their grief process and she 
can help the HIV/AIDS-affected community to experience a scriptural community. In the 
following I want to describe the church as a scriptural community and the consequences this can 
have in the Village of Grief. 



G.5.1: The church as a community with a memory 102 

First, the church as ecclesisa servitans has to consciously help and guide the HIV/AIDS-affected 
community to overcome individualization and avoidance, and identify and confront its 



The following is also based on my own experience as an ordained pastor for 10 years and as a 
funeral director for about 7 years. In addition I conducted informal interviews with 1 2 funeral 
directors and 4 clerics from different denominations about their experience and impression about 
the needs of persons in the situation of grief. 

These functions of the ecclesia militans are: 1) listen to and hear the bereaved, 2) honor the 
deceased, 3) give security in the time of change through knowledge about what needs to be done 
and 4) open a way for the bereaved back into life. 

102 

Verna Dozier: "The community has a cultic memory. Deep in that memory is some event in 
which they all shared, either by actual participation in it or by being brought in it." p. 95 



108 



communal grief. Similar to a pastor listening to the stories of the bereaved, the church as a 
community needs to make room where the communal memory can be built and kept alive. This 
step requires time and space. In an HIV/AIDS church service, for example, that would mean that 
the church should resist the temptation to move forward to quickly. The temptation is to assume 
that the experience of grief is already identified. Then one could move rapidly through a short 
period of liturgical grief and move to the proclamation of hope, inclusion, or resurrection. To do 
so has understandable reasons. One is that to stand in the face of pain and grief is much more 
difficult than to proclaim a solution for this pain and grief. This is especially true for the limited 
timeframe of a church service or a sermon. There is an understandable tendency to spend more 
time on the proclamation of the Good News. The other reason is that the church usually comes 
from an experience of individual grief. In individual grief, the statue on the Centre Square is 
unusually well defined. The person one grieves for is right there present in a coffin and the 
grieving ones are usually quite able to identify and describe their loss. As I have shown, this is 
not true for HIV/AIDS-related grief. The church cannot assume that there is a communally 
agreed-on Statue on the Centre Square. In order to move on, even in a church service around 
HIV/AIDS, this statue has to be named and described. The church therefore is faced with the task 
of finding ways appropriate to the respective liturgical tradition to tell and retell the story. 103 



1 AT 

One example for a communal identification of the Statue on the Central Square could be 
found in the retelling of the story of the Exodus in the Jewish Pesach Seder. This retelling of the 
story, in a traditional question and answer style consciously includes the young children. With 
this, the children, the youth, and next generations become a part of the story themselves. It would 
be an interesting exercise to develop a liturgical retelling of the story of HIV/AIDS for a 
HIV/AIDS service. 



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As ecclesia luctans, the church also has the responsibility to add her own particular voice to the 
voices of the larger HIV/ AIDS community. With this the church also builds, creates, and shapes 
the Statue on the Central Place. The church needs to incorporate her different understanding of 
reality to the communal memory. 

The church is a community that is experienced as scriptural community with building and 
keeping memory. It is therefore the church's responsibility to provide creative pace and time for 
the process of this memory keeping. 

The church has also a third responsibility. As a community that is aware of the 
importance of being a scriptural community, the church needs to remember for those who cannot 
or do not want to remember. The church needs to do this so that those others can come after 
times of forgetting to access that memory. The church as scriptural community needs to be the 
memory of the HIV/AIDS-affected community. This is especially important in the situation of a 
growing individualization and avoidance. The church has the responsibility to become a living 
spiritual library. The church needs to keep the memory of all the lost individuals and all that is 
lost. And the church needs to remember the suffering and the grief. This needs to be done in 
many multidimensional ways, with places and times of remembrance, with books of memories 
but also with liturgy, song, contemplation 104 and prayer. To bear and carry the memory is an 
ongoing process that cannot be completed and needs to be reinvented constantly. 



Here I am inspired by the self-given task of some contemplative Roman Catholic nuns that 
live in a convent next to the concentration camp in Dachau/Germany. I do not want to make any 
connection or comparison between the Holocaust and the HIV/AIDS crisis. But it would be 
interesting to envision a monastery of contemplates, right in the Castro District in San Francisco, 



110 



G.5.2: The church as a community with a ritual life that keeps the memory fresh 

This ritual life does not only include the traditional rituals and rites. Especially in cultures like 
Germany that become more and more secularized and therefore less knowledgeable about 
traditional rituals, the church needs to find creative ways to keep the memory fresh. The internet, 
for example, poses a whole new challenge for internet based rituals. 

But even the traditional rituals need to be revisited constantly. For example those rituals 
need to stay clearly definable. It is very difficult to celebrate life and hope for the living, 
demonstrate for political change, and raise prevention awareness while focusing on grief, 
identifying and remembering who and what is lost - all in the same ritual. As a spiritual 
community, the church has a wealth of rituals and practices that can be rediscovered and applied 
to the grief that is related to HIV/ AIDS. 105 These rituals then need to be made meaningful for the 
community through explanation and especially through continuous practice. 

In the Village of Grief, this means that the church needs to guide the HIV/AIDS -related 
community to the different places and helps the community to develop adequate ways to address 
and express their respective needs. 



who would contemplatively keep the memory in prayer. Of course such a place would have to 
find an own specific way of living in this community that is sensible to the needs of the 
community that lives there. 
105 One could imagine and invent a HIV/AIDS rosary, where the experience of HIV/AIDS is 



included in the decades of a rosary prayer. 



Ill 



G.5.3: The church as a community with a passion for justice 

In the same way the HIV AIDS crisis has changed the nature of the church, the church needs to 

change the nature of the HIV/AIDS crisis. In the beginning of the 21 st century, the nature of the 

HIV/AIDS crisis is still a system of injustice. The church needs to work to change that system 

towards a system of justice, including, for example, equal access to recourses. 

In a passion for justice the church needs to change the grief into a basis and force for developing 

justice. 

The place for that in the Village of Grief would be the Town Hall and the Smith Shop. In 
the Town hall the church, as an important force in the secular world, needs to exercise and invest 
her influence to change the world towards a better and more just system. And the church needs to 
be not afraid to lead and be lead to the forceful experiences and expressions of the Smith Shop to 
do so. 

Verna Dozier connects justice and love closely: "Justice is about life in community. We 
are more individual-minded than community-minded. Religion for many of us is very 
individualized, private and personal. We wax eloquent about love and say not a word about 
justice. Love without justice is sentimentality." 1 



106 Verna Dozier, p. 97. 



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G.5.4: The church as a community with a commitment to love 

As scriptural community, the church first of all needs to acknowledge the different levels of love 
that are connected to HIV/AIDS-related grief. The church cannot be a place of unacknowledged 
love. 

The church as community expresses love traditionally in acts of charity and mercy. The 
tradition knows 7 corporal acts of mercy and 7 spiritual acts of mercy 107 . They, of course, apply 
directly to HIV/AIDS and are indeed acts of justice: To visit the sick can be applied directly and 
literally. To shelter the homeless gains a new challenge if we understand it as to give a spiritual 
home to those who have no such home anymore. This would open the church and change it in 
love towards a more spiritual community. To instruct the ignorant places the church out of love 
on the forefront of HIV/ AIDS education including a thorough education about sexuality in the 
church and in the respective educational system. In this understanding, it would be an act of non- 
love and therefore un-justice to refrain from or hinder such education. 

The last, to bury the dead, I understand holistically as not only providing a funeral, but 
also providing all that is connected to grief. All this is not an effect or reaction to HIV/AIDS, but 
a deep and ancient understanding of the challenge of the church through and in love. It is 



1 07 

Corporal acts of mercy are: to feed the hungry; to give drink to the thirsty; to clothe the 
naked; to shelter the homeless; to visit the sick; to visit the imprisoned; to bury the dead. These 
are based on Mathew 25. The spiritual acts of mercy are: to instruct the ignorant; to counsel the 
doubtful; to admonish sinners; to bear wrongs patiently; to forgive offences willingly; to comfort 
the afflicted; to pray for the living and the dead. 



113 



knowledge about love the church has since her beginning. The ongoing challenge is now only to 
apply that knowledge and love to today's world. 



• 108 

G.5.5.: The church as a community with a mission 

In all that the church is and does in the Village of Grief she has to be aware of her mission. This 
is to be the body of Christ in and for the world. Therefore she has to be the prophetic voice in the 
Village of Grief for the HIV/AIDS-affected community. This prophetic voice talks about the 
present and the future. As the prophetic voice in the present the church needs to call the 
HIV/AIDS-affected community out of individualism and avoidance. The church needs to cry out 
the painful truth that HIV/AIDS is still there, and that many are affected. She needs to describe 
the truth about the world, locally and globally. This prophetic mission again makes 
individualization and avoidance an impossible option for the church. The prophet has to see with 
open eyes and tell what he or she sees. 

And the prophetic voice needs to stand opposite to the presence and the reality of the 
grief and tell about the hope and the reality of God described in revelation. Right now the 
HIV/AIDS-related grief seems to have no end. The church though believes and knows that one 
day all tears will be wiped away. It is therefore the right and the duty as guides in the Village of 
Grief to tell all the grieving ones about the ways leading out of the village. The church needs to 
do that even and especially when they cannot see these ways. 



i no 

Verna Dozier: „ Last of all, scripture communities are communities with a mission. They 
speak a new word to the world; the message of how God intended the world to be." P. 98 



114 



There church, therefore, has a nearly impossible mission: To call the world, and for this 
thesis the HIV/AIDS-affected community, into and out of grief. 



115 



H: Conclusion 

The initial remark for this thesis was that "as a community we have not adequately grieved yet" 
for HIV/AIDS. I have shown that in its place and time there were many communal grief- 
responses for the losses of HIV/AIDS. These reactions were adequate for parts of the community 
in their times. I have also shown that the losses and therefore the grief responses to HIV/AIDS 
are very complex, multidimensional and ongoing. This means that the HIV/AIDS-affected 
community still needs to grieve communally. Each time and each situation calls for their own 
grief-responses. 

It is evident, that a community, like any individual, can only be invited and counseled to 
grieve. Ultimately it is the choice of the community itself and any individual in this community 
to what degree it wants to engage in this process of grieve. As a community the HIV/AIDS- 
affected community needs to actively search for helpful ways to express and experience the 
communal aspects of grief in order to bring the individual grief-experiences together and express 
what can only be expresses communally. Some of those responses will develop spontaneously 
and catch on, some will need conscious planning and guidance. 

The ecclesia in her many forms has a special responsibility in this communal grief. This 
responsibility comes from an ecclesiological self understanding and calls for a continuing effort 
to grieve and to help others in their grief. This effort will change and develop as long as the 
HIV/AIDS crisis exists. 



116 



During the research and writing of this thesis my point of view within the HIV/AIDS- 
affected community has changed. I am more aware of the historical dimension of HIV/AIDS for 
the community I live in. I understand better how I am really affected by the many losses through 
HIV/ AIDS. And I was able to develop an ecclesiological understanding for the situation and 
responsibility of the ecclesia and my own church. Although coming from a very particular 
problem, communal grief, in a very narrow field, the HIV/AIDS-affected community, I still 
arrived at far reaching consequences for the church. It is evident that the questions posed to the 
church by the HIV/AIDS crises are still pressing and relevant. Some of those questions and 
problems have changed during the development of the HIV/AIDS-crisis and/or found their 
solution, many more are still unanswered. The church needs to continue to examine the 
theological and ecclesiological questions of HIV/AIDS in order to come to an adequate 
understanding of this crisis and response to it. 

For the future I see a necessity to educate and work with the HIV/AIDS-affected 
community about the different aspects of its grief: This might include to show the positive 
effects of a healthy way of grieving; to show the effects of individualization and avoidance; to 
help to develop adequate communal grief-responses to individual aspects of the wholeness of 
HIV/AIDS related grief. 

And finally help the HIV/ AIDS affected community to live in and through this grief, in 
the hope that one day there will be no more causes for HIV/AIDS-related grief, and the grieving 
can take its natural course and we can find ways out of the Village of Grief. 



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Appendix: Living in the Village of Grief 



Introduction 

Going through grief and mourning is a profound human experience. It is highly individual 
but also communal. As we do not live for ourselves we do not mourn for ourselves, but together 
in many different systems of families, friends, and strangers. Everybody experiences his/her grief 
differently and expresses her/his mourning in different ways. Some understand it as a path they 
have to go, some as different stages they have to go through. Some see mourning as a list of 
tasks that have to be worked through; some just see an overwhelming single task in front of them 
that with time becomes less overwhelming. Grief and mourning can be understood in different 
ways. They can be seen as psychological problems that need therapeutic help. They can be also 
understood as human problems that are best addressed with the methods of self-help. Or they can 
be understood as spiritual experiences that need guidance and/or counseling. 
The following can be understood as both self-help and a proposal for counseling. The story, the 
explanations, and the guiding questions can be read to understand one's own grief and mourning 
better. It can also help to gain an understanding of the grieving and mourning of others, which 
might be so totally different from our own. In this sense it can be understood as a method of self 
help. It also could be used in a one-to-one counseling situation or a counseling group. Here it 
could serve as a method to facilitate a communication about grief and mourning, hopefully 
leading to more understanding. 

The story purposely was not designed in a particular religious or Christian framework. It 
is not an attempt to explain life and death spiritually. It is an attempt to help people to understand 
their own grief and the experience of grief of others. 



The Theory 

"Grief Theories" are a very useful tool to understand grief in general. They are also very 
useful for people in the process and experience of grief and mourning to understand what is 
going on in them, with them and around them. The can help too understand the own reactions in 
grief and the reactions of those who are close to oneself. Unfortunately "Grief Theories" are 
often very theoretical, dry, and not easy to understand, especially in times when mourning is a 
reality of life and it is therefore difficult to have the necessary distance for theoretical thinking. 

The following serves only to mention the grief theory I base my story on. The purpose of 
this paper is not to do an in-depth description and critique of the different grief-theories. In this 
paper I want to introduce a creative way of understanding one's own grief and the grief of the 
others that grieve with me. For this I work with the dual process model of coping with 
bereavement by Stroebe. 



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This model allows a lot of freedom of individual expressions and experiences of grief and 
mourning. Stroebe describes two main areas that a grieving person experiences: The "Loss 
orientated" area and the "restoration oriented" area. Loss orientated are fears, regret, sadness, 
hopelessness isolation, feelings of guilt, preference to dwell in memories, acknowledgement of 
grief, mourning. Restoration orientated are feelings like hopefulness, gratefulness, the desire to 
move on, the making of plans, looking into the future, hunger for normality. Also the taking time 
off from grief and the fact that the grieving person is able to function. 

According to this model the grieving person moves freely between those two main areas 
and within those areas. Sometimes this movement can be very rapid and oscillating, sometimes 
the grieving person remains over a long period of time in one area or sub area. There is no set 
order or timeframe for this. One can also experience extreme changes from one to the other 
within very short periods of time. 

Therefore this model is extremely helpful in looking at groups of grieving people. It 
allows the different individuals to position themselves in any given time at a specific place in this 
model, without needing to expect the others within the grieving group to be at the same 
emotional, intellectual or spiritual point. This model explains therefore very clearly why and how 
different individuals can experience grief very differently and live out there mourning in very 
different ways. They are just in a different space within this model. 



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(The oscillating or dual process model) 




(The Illustration comes form: Grief groups for children and youth, the facilitator's manual from 
Khululeka, South Africa.) 

"Living in the village of grief is the attempt to bring this model in the form of a 
narrative, finding different imaginary spaces for the different subcategories of the two main 
areas. Those different imaginative spaces tend to be situated more in one area than the other. But 
they all include elements of both. That means that if two persons find themselves in the same 
place, they still can have different experiences of that place. 

"Living in the village of grief presents a narrative that gives a visual and imaginative 
background to different experiences of grief and mourning. The reader should be able to identify 
himself/herself and his/her experience in this narrative. This should help to identify ones own 



120 



place in the larger experience of loss, grief and mourning. And the reader should be able to 
identify where others are in their experience of grief and mourning. Very often people grieve 
together for the same loss, but they do it in different pace or different intensity. 

Although grieving is a highly individual experience, it is nevertheless an experience that 
happens with others. Especially in families, this duality of the individual and the communal often 
leads to conflict. Different people deal with their grief differently, they mourn differently. What 
is appropriate and helpful for one, might look highly inappropriate and even irreverently to 
others. One might need a lot of quiet time to learn to understand the loss, needs a lot of time 
where nothing changes. Another might feel the need to be hyperactive, change a lot in the own 
life. Some people want to keep as much of the possessions of the deceased around for as long as 
possible, others might want to clean out everything as soon as possible, for everything is loaded 
with painful memories. There is no right or wrong in this, just difference. The story might serve 
as an explanation for this experience and hopefully as a way to communicate the own 
experience. 

Grief is not single experience one has to go through, but it is a highly complex 
conglomerate of very different, often contradictory experiences. There is also no real end to it. 
The acute phase of grief and mourning will finish at one time, but the experience of grief will 
remain, as the loss will remain. The experience of grief changes over time. 



The Narrative: Living in the Village of Grief 

The Dream 

After weeks I finally could sleep again and woke up in a dream. I found myself in a deep 
forest, surrounded by darkness. Tall trees stood around me, blocking of the sky and the sun. I did 
not know if it was day or night. I was caught in the grey of dusk or dawn. There was no path, no 
way around me, no way to go. And I started to walk, wandering aimlessly in the forest of my 
grief and loss. I was alone, had no place to go, no reason to walk. My bare feet felt the stones and 
the rough ground, every step hurt. My hands, my face, my body felt the thorns and the hard twigs 
and the burning leaves. No part of my self was whole, everything hurt. So I walked for a long, 
endless time, in loss and grief, in sorrow and loneliness. 

Then the forest thinned and I stepped out into open space. Soft grass did lead me down 
towards a little village. Small houses nestled in a valley around a central square. Slowly I walked 
towards the houses. I could see the light in the windows, smell the smoke from the chimneys, 
could feel the peace. As I approached I saw people coming towards me, smiling, greeting me. 
"Welcome," they said. "Welcome in your place of grief. Here you can be, you can grieve, here 
you can stay and be." I did not understand what they meant. Did I not already walk a long way in 
sorrow and pain, was I not hurt enough? Should I live forever here, in this village of grief? They 
smiled at me, and said: "Come along, we will show you where you are." And they took me into 
the village, towards the central square. On the way I saw people whom I seemed to know. My 



121 



heart told me that those people were part of my life, but I could not see them clearly through the 
tears in my eyes. 

"This is the village of your grief." I heard, "everything you experience, everything you 
live, has a place here. After the confusion, the pain, the raw hurt of the forest, after being lost, 
you are here. Here are places you can go, with your grief, your anger, your tiredness. You are 
here with all the others who mourn with you, who grieve with you for your love. Here you and 
they are free to go where you need to go, sometimes together, sometimes alone. You can go 
quickly from one place to the other, or stay for a long time in one place. You can be together 
with others, or alone, just as you need it. There is no right or wrong, no correct or incorrect way 
to do your mourning. No one can tell you what you need to do; no one can walk your path. You 
are not alone, yet they might go their way. Some of the way you will walk together. Some of 
what you and they will do, you will understand. But there will also moments where you will not 
understand. You will ask why they are not with you, why you feel so different. But here, in this 
village of your grief you can go where you need to go. You will be welcome wherever you will 
go. Stay as long as you want, as long as you need. Let us show you the different places of grief, 
of mourning and of love." 

So I went with them, walking through this place, finding houses and rooms, places for me 
and for others. I saw the Central Square, the Town Hall, the Smith-Shop, the Hospital, the Pub, 
the Shop, the Church and the Cemetery. 

To lose a loved one is a terrible experience. Expected or unexpected, nothing can prepare 
us for this situation. Suddenly we find ourselves in the overwhelming situation of grief and 
mourning, where nothing is clear, where one is in shock, where one finds oneself bruised and 
hurt. The first time of mourning is like walking through an endless forest. A place without light, 
where day and night have lost their meaning, where everything hurts and cuts, burns and bruises 
us. We hurt and in the same time we are numb, unable to feel anything, except that loss. 

Grief and mourning is a very complex and individual experience. There is no grief that is 
exactly the same as the other. No two people experience the same loss. Although the same person 
has passed away, it is not the same person for them that mourn. It is the wife or the husband for 
one, the father or the mother for others, the sister, the brother, the friend again for others. 
Therefore grief and mourning will be different for all. So everybody will experience his or her 
own grief, will mourn in his or her own way. Men and women will mourn differently; singles and 
those in close circles of families and friends will mourn differently; young and old will mourn 
differently. And everyone will make his or her own experiences. 

But grief and mourning also usually happen in relationship to others. There are other 
people around you that grieve and mourn themselves. Every one of those persons around you 
does this in their own way and pace, with their own expressions. Sometimes those expressions of 
grief of different people are compatible and go along together very well. Sometimes they are so 
different from our own experience that we cannot understand it. Sometimes that leads to 
irritation, because they are on a different place, sometimes it even leads to conflict when we 



122 



cannot understand why the other does or say things we do not expect, or that hurt us. Or the 
opposite, that they do not do and say things we want them to do or say. 

It is therefore important to think about one 's own grief, to find out what it is what I need, 
and also think about where the other might be in the same moment. Find places where several 
people can be together, and others where I can be alone, perhaps need to be alone. Sometimes 
we even change quickly, within moments, from one place to the other. Our moods and needs can 
change, and sometimes it is not even clear, why they change. Not even for ourselves. 

The different places and buildings in the village of grief are symbols for those different 
needs and moods in our mourning. There is no set order in which we have to visit them; we 
might not even visit them all. In some places we will stay for a very long time, others we will 
leave quickly. In some we will be once, and never again, others we will visit very often. And as 
time goes by, different places will become differently important. All those places and buildings 
are invitations to go to, stay when we need it. And perhaps find new and other places which are 
just for us, are our own invention. 

After the description of each building and place there will be a short, more theoretical 
reflection of this experience. 



The Central Square 

First my guides lead me to the central square. Several old houses nestled around this 
place, cobblestones paved the ground. There was life, although I could not see the individuals 
being here with me. All I could see was the center of the square. There was a basin, a wellspring 
of fresh water, with two, three steps leading up to it. A narrow wall surrounded the pool of water 
and from several outlets on a central column that rose from its middle came a constant flow of 
water. A small bush of red roses grew on one side. It was a peaceful place. But the most 
surprising of all was the central column. On the top, there was a statue. At first I did not 
recognize it. I thought that the light of the sun was playing tricks with my eyes. But then I saw: it 
was the beautiful image of my loved one, the one I lost. 

With tears in my eyes, I turned to my guides, wondering, asking. 

"Yes," they said, "you see it right. It is your loved one, the one you mourn. This is your 
place, and here your loved one is at the center of it all. All your tears, the sorrow and the joy, 
flow from this fountain, and your tears water the roses of your love. Here is the center of your 
grieving, to here you can return as often as you like. From here you can go to all the other places. 
Here you can remember, here you can love. Do not be afraid, that the memory will fade. Others 
will meet you here, and you will share your memories with theirs. Your heart will see your loved 
one here, even if your eyes will be tired. Nobody can take this statue away, and you can keep it 
here, in the center, forever." 

The love for the one that is lost is in the center of all that we feel. The fact that he or she 
is no longer here, no longer part of our life is the central experience. And the love is still there. 
Every tear of grief and sorrow that we shed is also a tear of love. Only where there was love, can 



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there be grieving and mourning now. The love did not stop with our loss, the love will stay. How 
we live our love will change, but not the love itself. 

And we do not have to give up that love, surrender it to memory. We can still keep and 
live and feel that love as a reality of life. For our loved one is still part of us, still part of our own 
experience of life. We do not have to give up or let go of this love. No-one, nothing can force us 
to give up, or say farewell to that love forever. Our love can stay in our hearts. It has to find a 
new place, though. We cannot stay in the place of our memory forever, freezing everything into 
an everlasting moment in time. As hard as it is, we have to continue to live, leave that museum of 
our memories. But we can take those memories, that love, and our loved one with us, into our 
life. 



The Town Hall 

Next, my guides lead me to a building nearby. They looked at me with love and sorrow in 
their eyes. "This is a place, where you will have to go, now and in the future. 
A place you will need to organize your life without the lost one, without your love. We know no 
one wants to come here. It is perhaps the worst place of them all. The papers you will have to fill 
out, the decisions you will have to make: Shall you stay or shall you move? And where are all 
the papers, all the documents you need? You never did that, never did it alone! All the decisions 
you shall make! You don't know if you can do it, if you want to do it! 

And worst of all, we know, you do not want to even think about the future. But still, there 
will be a future. A future for the next hours, days, and years. And that perhaps is the most 
difficult thing to accept." 

He laid his arm around my shoulder, leading me on and said: "Come, there is more to see, 
and no decisions to make now." 

When we lose a loved one, almost immediately we have to make decisions. Often we have 
to organize funerals and make arrangements for a grave. Immediately we have to deal with 
forms and documents, which we often have never seen before. In a moment of shock and 
confusion we have to decide on things that often cannot be changed later. A gravesite stays 
where we decided it should be, even if we move. 

In the weeks and months after the loss we have to make a lot of those decisions. Some 
might come naturally, because we have made those decisions all the time. Some might be very 
difficult to make, because we never had to make those decisions in our life. And sometimes the 
smallest decisions are the hardest: "What shall I eat tonight? " can be a huge problem for 
someone who was used his/her entire life, that this decision was made for them. Decisions that 
seem very small to one can be huge for others. Sometimes the largest decisions come very easy: 
"I will sell the house and move" can appear great to others, but might have already be made 
long before the loss, and now is only executed. Decisions that seem life changing and big for one 
person can be small and easy to make for others. 



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All those decisions take a lot of energy, the small ones as well as the large ones. All of 
them add to feeling overwhelmed. It is therefore very important, to recognize those decisions as 
something important, and something that has to be done at its own time. 

Sometimes this decision-making process leads to tension and conflict in a group of 
grieving individuals. Not all the decisions are valued the same by different people, and the 
timing can be different. Some people make decisions quickly, others take a long time. 
In grief and mourning we therefore should be patient with each other, recognizing the difficulty 
of making decisions and being patient. We should help each other in making those decisions. 
And we should always stop and think about the reasons the other might have before we start to 
criticize. 



The Pub 

We then came to a place where I could hear laughter and joy coming from the door. A 
warm light shone from the windows, and I saw people coming and going. I saw friends shaking 
hands, smiling at each other, they laughed and joked. I could feel happiness, the community, the 
absolute opposite of what I felt. There was nothing of the loneliness I lived in. First I wanted to 
turn, wanted to be angry! What was this place of happiness, of joy? And why was it here, in my 
village of grief? How could they dare to be so full of life, so full of joy, when my loved one was 
no more? I wanted to turn to my guides, angry, full of rage. Why did they show me this, why 
torment me with something I could not have anymore? 

But then I stopped. I did not turn, but watched. I saw with desire in my heart this place, 
and everything in me longed to be part of it. To stop grieving, for just a moment, forget my loss, 
for just a minute, that was, what I wanted. To be part of life, once more. Suddenly I wanted to 
feel my body, my heart, my soul once more. I wanted to go in and celebrate. I did not care that I 
did not feel anything to celebrate. Just to be among those people, friends, in joy, as we had been 
together so often before. 

Tears came in my eyes. I did not know what to feel anymore. Longing and loss fought in 
my heart. I felt a hand on my shoulder, comforting, and one of my guides spoke: "My friend, this 
place is also part of your village of grief. It is your longing for life as well as the reality that 
others might want to celebrate and be joyful. They will not have forgotten, they still might 
grieve, but life goes on, and days of joy will come. The circle of the year will bring the seasons 
of joy, and the ordinary day will bring the unexpected laughter. Don't be angry with them when 
they will need this time of rest from grief and mourning. And don't judge yourself, when you 
will enjoy these times of rest and refreshment yourself. It is part of your grief. You might come, 
and stay for a while. Let your friends and family relieve you for a moment of your pain. Bring 
your loved one in your heart and memory with you; remember the good times, before you step 
out of this place once more." 

Grief and mourning is a complex and difficult experience. It is not something one does for 
a set period of time and, after having completed it, continues with the normal life. The loss of a 



125 



loved one changes everything. It is therefore often very difficult to understand, that other people 
will go back to their normal lives, while we are still in the middle of our time of mourning. To see 
others continuing with life or, even worse, enjoying themselves are very painful experiences that 
often lead to conflict. We find it difficult to understand, that others laugh and enjoy their life. We 
are angry with them and we are envious and often angry with ourselves for feeling this anger 
and envy. Because of course we know, that they cannot live our grief, that they cannot do our 
mourning. 

Especially in families with children this can lead to stress and conflict. The little 
grandchildren for example might know that Granny passed away in January, but for them this is 
half a lifetime ago. And now they want to celebrate Christmas, they want their presents, they 
want to celebrate. For them it does not make sense, that Grandpa is sad, cries and gets 
impatient. They do not understand that for him this is the first Christmas without his wife in over 
40 years. And sometimes adults can be children, too. 

It needs a lot of patience on both sides. Those of us who want to live, or who are forced to 
continue a more or less normal life because of family and work, need to be patient. We need to 
take care of those whose life is scattered. We have to make room for their grief. And those of us 
who are grieving need to be patient, too. We should try to understand what those expressions of 
life really are. It can be that of the others are in a different situation in their grief But it can also 
be that they only need a short break from their grief, or that they have learned to live with the 
demands of the calendar, the work, the social status and the necessities of social life. 

It is difficult to watch others live and celebrate. It is even more difficult to feel it in 
oneself. This need to be with others, to be not alone for a while; to join in their happiness for just 
a moment; to allow ourselves to laugh, in the middle of our tears. This can be very difficult: to 
laugh even when our loved one is no more. 

But it is a reality of life that those lighter moments are a part of our life, too. And 
therefore we have to be patient with ourselves and allow ourselves those moments of rest. We 
can be together, and celebrate in joy with our friends without forgetting our love. The same 
patience we grant our grandchildren, we can sometimes grant ourselves. 



The Smith-Shop 

Already from far away I could hear where we were going. The sound of hammers, 
ringing high in the air, the beating of metal on hot metal welcomed us. "What shall I do in the 
smithy?" I shouted in the ear of my guide. "I never worked with iron in my life!" "Yes," she 
answered, smiling, "Yes, I know. But still, this is your place of work. Where you really can beat 
it, hammer it out, sweat, be angry and violent! Here you can work all that you need to do, the 
hard work, the painful work. To this place you can come, when you feel that sitting around is not 
enough. When your body and your soul cry out for action you can come here and take the 
hammer, and swing it." 

I saw the hot fire, saw the tools, and saw all the work I wanted to do. I saw what I needed 
to do, for myself and for others. Today I was too tired to start. I knew that today the hammer 



126 



would be too heavy. But I also knew that tomorrow I would come back, take up the chore, and 
with tears and joy would work. 

To grieve and mourn is hard work. Not only in the actual things that one has to do in the 
event of a loss. But also in the emotional work that has to be done. Different people react very 
differently to the experience of loss. Some become literally paralyzed, not able to do even the 
smallest things; others become overly active, feel the need to work and do things. Some have to 
work day and night to cope with this stress. This can lead to very painful moments especially in 
families when one part of the families feels the need for quietness, of not changing anything, and 
another part of the family wants to work. Sometimes people start immediately after the loss, often 
even before the funeral, to clean out wardrobes and cupboards, pack clothes and give them 
away. These activities are that experienced as insensitive by others as an attempt to forget or get 
the memory out of the way. Often it is neither of those, but simply the need to do something, to be 
active in a situation where we cannot really do anything anymore. 

Some people return to their daily work very quickly. To go back to work, to do something, 
sometimes to return to a routine, or do something that has some kind of meaning for them is part 
of their grieving, their way of working it through. 



The Church 

We entered a large, quiet building. Quietness and serenity welcomed us into the soft light 
of candles and the warm colors of stain glass windows. There seemed to be music in the air, 
though I could not tell where it came from, nor what it was. We sat down on one of the benches, 
sat there for what seemed to be forever. A deep feeling of peace filled my heart, more peace that 
I ever knew, a peace and quietness that brought tears to my eyes. Without any words I 
understood what my guides wanted to show me here. Here was the quiet place, the place to 
meditate. Here I could search for meaning in my life, think, free of all the chores that filled my 
life. Here I could even rest and sleep, and sleep the pain away. And here I could listen, listen to 
my heart and to that music of my soul. 

Perhaps one day I could even come and pray. Pray all my sorrow and my pain. And 
perhaps those prayers could find an answer, perhaps there was somebody out there who would 
listen, feel and respond. Today I did not know what to believe. 

This church is not necessarily a place about faith, but of peace and quietness. And most 
certainly this church is not about a particular faith or creed. Some people have clear ideas of 
faith and can express their faith in clear words, even in times of loss and mourning. Some find a 
lot of strength and consolation in their faith. Their churches, temples, mosques or synagogues 
are very real places to go to and feel connected to a higher power and their inner being. 

Some people cannot and don 't want to express their faith. They have more questions than 
answers, especially in this time. 



127 



And others feel nothing but hate and rage and anger towards God in all of God's forms 
and even more to God's representatives on earth. 

Sometimes we have all those experiences right there within our selves. 

But it is part of our human being, our humanness, that we ask those ultimate questions: 
Where do we come from? Where will we go? Why me? And ultimately: Why? 

We all ash those questions. Some of ask them louder than others, some ask them sooner, 
others later. And we only can ask those questions ourselves, we cannot force the others to think 
and ask them, too. But we can invite others to listen, when we ask, and we can open ourselves to 
listen what they tell us. 

The hospital 

I could smell the next building, before I really could see it. It was the antiseptic, sick 
smell of a hospital. Green walls in long hallways where every step has an echo and everyone 
only speaks in hushed voices. I knew this smell, these sounds all too well. The memories of 
endless hours rose from my heart. 

"This is not only a place for painful memories. It is also a place for you. Many things in 
you need healing. You are hurt, in body, mind and soul. Take your time to feel your wounds, to 
acknowledge them, to let them heal. This will take time. And you will have to take good care of 
yourself. This is not something that happens by itself. In the time of grief sometimes your body 
speaks not clearly to you. You forget to eat, to drink. You have to be your caretaker, your nurse, 
and take good care." We started to walk down one of the long corridors, and I saw people being 
nursed, and cared for. Others sat next to them and listened, as they told of their wounds and 
aches and pains. I saw doctors thinking about the correct treatment, and nurses who brought what 
was needed. In one room I watched, as they removed a heavy bandage, looking carefully at the 
wound. And I saw, as surprise replaced hopelessness in the eyes and on the face of the patient, as 
she saw, that the wound had started to heal. 

"And you find others here as well, here in this place of pain and healing," said my guide, 
"who are walking wounded, like yourself. There are times when you need to know your own 
pain, your own wound, to understand how others are in pain. And sometimes neither the doctor, 
nor a nurse, no medicine and no hospital can help, but only those who grieve and suffer with 
you. They are the ones who have the patience to watch you get better." 

I knew that I had to come here often, for myself and for my healing. 

Very often the hospital in our real life is a place full of painful memories. We have spent 
hours on the bed of a loved one, saw him/her in suffering and in pain, and eventually pass away. 
It is often the very smell and the typical sounds of a hospital that throw us right back into that 
horrible time, even after years. 

But hospitals are also places of healing. When we lose a loved one, we are hurt and 
wounded and it takes a lot of time to heal those wounds. This hurt and those wounds can be very 
physical. A long time care for a sick and dying loved one can leave our bodies tired, weary and 



128 



unwell. Part of our grieving therefore means that we have to take care of our own body. This is 
not an addition to our grieving, but part of our grieving and mourning itself. 

Even if we are not hurt physically, grief has a physical dimension. It can lead to problems 
with sleeping or the opposite: to an overwhelming tiredness. Our body reacts to grief, and we 
have to listen to our bodies if we do not want to hurt our bodies even more. 

Sometimes though, especially during the first time of grief, our bodies do not tell us 
clearly what they need. This happens especially in the time between the actual death and the 
funeral, but also often in the time after. Ours bodies don 'tfeel hunger or thirst, we feel numb. It 
is therefore very important that we consciously eat and drink. We have a responsibility for our 
bodies, even and especially in our grief. 

The same is true for our mental and spiritual side. There are deep wounds there. This can 
be anger that he/she died and left us alone. This can be anger towards others, who could not 
prevent that death, or might even have caused it. All those hurts and wounds are real and 
important. We have to examine them carefully and think how we can heal them. This healing can 
mean a better understanding of what happened, this can mean gaining a certain distance to parts 
of what happened, or can lead to forgiving others and sometimes forgiving even ourselves. This 
can take a very long time and is a very difficult part of our grieving. 



The Shop 

We stood in front of a little shop. It seemed that it was one of those little places that are 
horribly overcrowded, but where you could find everything. Where a nice old lady served you in 
your childhood and never let you go without a candy out of a large jar on the counter. It was one 
of those places that hardly exist anymore, nowadays. 

Of course, there needs to be a shop in this village, I thought. Where else should one get 
all those things one needs? But then I hesitated: What did I need? What did I desire? The few 
things of my daily life I had, and more I did not need. I did not want to go shopping, not ever 
anymore. 

"We know," said my guide. "But this is not an ordinary shop. This is the shop where you 
can get your things of life, the things you need. Here you can find that new flat, and that new job. 
That smaller car and that smaller stove to make meals just for one. Here you can find those 
things you wanted to do for so long, but couldn't do it. Here you find addresses of groups and 
meeting places, of help and support. Here you can find all things you need." 

I understood, but said: "I do not want to find anything new. Why should I? Life has 
stopped. Why should I buy new things, find new places? I do not need anything; I do not want to 
go anywhere. There is no meaning anymore." 

"Yes," said my guide, "the life you knew, the life you loved has stopped, has come to an 
end. But your life itself has not stopped. Your life goes on. It is different, now. And therefore 
you will need different things; you will have to find a new meaning, new ways. And so it is all 
right to come here, to go out to shop, to find new things. Some of them you need, and some of 



129 



them you might just want. You want them because they are good for you and you will enjoy 
them. All of it you can find." 

It is a reality that the loss of a loved one often comes with other profound changes in our 
life. Not only did our status in the family change, but often or circumstances of life change, too. 
We have to think to move from a large house that suited two, to a smaller place. We have to 
move, perhaps to be closer to the family, or make that move of retirement now. Sometimes we 
have to get a job, to support the family. 

Some of us might need to obtain professional help, in therapy or just for the daily chores. 
We need a new car, or have to learn to use public transport. We have to learn new skills and 
have to reorganize our life. These things we need are very important, and it is important that we 
think about them carefully. It is part of grieving to think about one 's own life and future. 



The Cemetery 

We then came to a place where it got dark. A heavy iron gate guarded the entrance, a high 
wall reached from horizon to horizon. Ivy grew among the bars of the gate. Under dark skies I 
could hear the calling of an owl, flying under the low branches of a weeping willow. I felt the 
cold, could feel the thorns of the forest in my skin. I knew this place. At the day of my loss it 
became my home, too. We stood at the gates of the cemetery. I knew: here was my love and here 
I buried all my hopes, my dreams, my joy, my laughter. So often I had already been here, during 
the day, and now in my dreams. Fear surrounded me. 

Tears filled my eyes, I could not speak, nor hear. I sat down next to the grave, where I 
wanted to bury myself. A long time we sat, in crying silence. 

Then my guide spoke. "Yes, cry and grieve. Let no one tell you, that you have to leave 
this place. It is a dark place, yes, a place of mourning and of fear, of unknown horrors hiding in 
the darkness between the graves. You have to come here, even if it is hard. You have to come 
here and meet your fears and all that scares you, in death and life. Because only if you are here, 
and see what it is that scares and frightens you, can you deal with it. You can fight it, work it 
through. Yes, you can go to sunnier places, but then you have to return and do your work. For if 
you do not find your grief and fear, it will find you, haunt you, torment you. This cemetery can 
be a good and comforting place, a place of memories, but also a place of fight." 

For some people the cemetery and the grave become very important. They visit the grave 
every day; they feel that they have a special connection to their loved one, here, at the grave. 
Sometimes this cemetery is not even a real place, but literally a place inside. It is the place of 
memories, of reconnection, a place where we can feel very close to our loved one. Sometimes 
this place can be a picture on the wall, with whom we talk. Or the empty chair that will remain 
forever his or hers. It can be a place where we can see our loved one sitting with us, during long 
and lonely evenings. 



130 



All who grieve and mourn have those places. For some it is very important visit the 
actual graveside regularly. For others it might be an utterly meaningless place, where nothing of 
the loved one remains. In every group of mourning people, there are different cemeteries, 
sometimes as many as there are people involved. And it is very often not the actual, real 
cemetery. If someone does not visit the grave or the cemetery regularly, it does not mean, that 
this person does not grieve. They might just have another place. And it might be helpful to find 
out where the other goes to grieve, inside or outside. Perhaps we can come along one day. 

The Cemetery is also a symbol for our fears. When we experience loss we are also 
confronted with a lot of fears. We have to face our own mortality; we experience fear of the 
future; we do not know if we "can make" it; a lot of seemingly little things scare us: to use the 
washer and dryer, to fill out bank forms, to deal with daily life. All that and much more scare us, 
sometimes even paralyzes us. Part of the grieving is to deal with those fears. Some have to be 
addressed by simply learning to do it: Reading the user manual and washing clothes for the first 
time for example. Some need professional help. But all of them need to be dealt with; otherwise 
they will not go away and scare us forever. 

What seems very scary to one can be very easy to others. Here lies a great opportunity 
for grieving groups of friends or families. One can find out what the other needs and help each 
other. 

People walking around blindfolded or with their hands in front of their eyes. 

While we walked through the village, visiting all those different places of my grief, I 
started to notice other people walking around. Some I knew and I was glad to know, that they 
were grieving with me. Some I did not know and I wandered why they were grieving here, in my 
village. And then I noticed strange people. They walked around blindfolded or with their hands 
in front of their eyes. Some of them carefully took step after step, insecurely trying to reach 
around to find obstacles in their way. They did not fall or hurt themselves but hardly moved from 
the spot they were. Others walked briskly, as if they could see, but only walked in circles. And I 
saw some of them bumping into things and people, hurting themselves and others. 

My guide shook his head and sighed, when I asked him about those people. "They do not 
want to acknowledge their grief, they want to deny it or avoid it. Usually we see them wandering 
in the wilderness, getting hurt in the forest. But even here they do not want to or cannot see. 
Some blind themselves and others wear blindfolds that were put on by others. And although 
sometimes it is good not to see for a while, they do not know their way and they do not find 
places of healing and rest. And often they hurt others, falling over them or walking into sacred 
space. The saddest thing of all, though, is that they cannot see those who want to help them. So 
they are alone, without help. We can only hope that they will open their eyes one day, seeing 
what they grieve for and in that find their own direction and the places they need." 



131 



Grieving usually is a difficult and exhausting experience. So sometimes it looks easier not 
to grieve at all. There are many reasons why one might deny one 's own grief "After all the 
suffering my loved one had to go through I should not grieve but be thankful that it is over " "It is 
not my grief because I only was a friend, not part of the family. " "I have grieved until the 
funeral, now I have to go back to life and I do not have time/strength/opportunity to grieve. " 
These can be very conscious decisions, but most often this happens on a pre- or subconscious 
level. Some of those reasons can grow out of ourselves and are part of a natural and healthy 
system that protects us from overwhelming emotions. Some of them are placed onto and into us 
from the outside, through culture or society. 

This can also take different forms from denial to avoidance. Denial is the statement that 
one does not grieve and there is no reason to grieve at all. Avoidance knows about the reason for 
grief, but declares that this particular grief has no connection to oneself. Avoidance and denial 
can have the form that requires professional help by especially trained personnel. But it also can 
start with euphemisms that help us to not acknowledge the dramatic impact of a loss, such as "he 
fell asleep, " "she moved on, " or "we are just grateful that she does not have to suffer anymore. " 

It can be very painful to observe such a situation in a loved one. To see that somebody 
does not grieve in the way we think he or she should grieve sometimes leads to reactions that are 
more hurtful than helpful. Everybody has his/her own ways, places and times of grieving and one 
should not superimpose one 's own way, place or time onto others. It requires a long and 
thoughtful process of self-examination before one can start to very carefully and lovingly 
approach this subject with others. 

By its very nature denial and avoidance are very difficult to identify in oneself. If friends 
and trusted ones continue to point into that direction, it might be helpful though, to do a 
thorough and honest self-examination to identify ones own true feelings. 

Grief is a necessary process people have to go through, but there are many different ways 
and one should always look at one 's own grief before one comments on the grief of others. 



Ways leading out of the village.... 

Finally we walked past the houses, left all the places we had visited behind. I got tired 
and I wanted to rest. I did not want to go back to the forest I had come from a dream ago. "You 
may sleep, and rest" I heard my guides say. "But we want to show you one last thing." So I 
opened my eyes once more and did not see the trees, the forest I had expected and feared. Instead 
I saw a path in front of me, leading alongside a small stream, through blooming meadows, over 
rolling hills past friendly trees. 

"We want you to know, that there are ways that lead from this place. They are not for 
you, yet. And perhaps it will take a long, long time before you will have the strength or the desire 
to walk them. Others might walk before you, some will walk with you and others still, will stay 
behind. You alone can decide when you will go, how far you'll walk, how fast you'll travel. 
Nobody can tell you when you have to go. Nobody will force you out of this place. For it this is 
your village of grief. 



132 



And even if you go, walk one or two or many steps away from here, you can always 
return, visit the place you need. The doors in this place are always open, you are always 
welcome. But now sleep, and rest, for the next day is near. . ." 

I closed my eyes and slept and woke up in the morning for another day of sorrow, grief 
and hope and life. 



133 



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